Collaborations between Patient Advocacy Groups and Pharmaceutical Companies

Collaborations between Patient Advocacy Groups and Pharmaceutical Companies

The importance of patient involvement in the medicines development process is now widely recognized. The lived experience of patients brings added value at every step of a medicine’s life cycle. Successful and ethical collaborations between patient advocacy groups and pharmaceutical companies are therefore critical for both parties. These collaborations work in various ways to improve healthcare outcomes, promote awareness, and advance research and development.

At the 2023 WAPO Global Summit in Buenos Aires, WAPO board member Clive Deverson ran a very popular workshop on Patient Advocacy Groups’ Interaction with Pharmaceutical Companies. In this month’s blog he will provide examples of how these two groups can work together, but more importantly he will share information and resources covering the restrictions and challenges facing the pharmaceutical industry when it comes to working with patients.

The purpose of this blog will be to:

• Explain why pharmaceutical companies cannot always do what patients or patient advocacy groups wish them to do – the guidelines and codes of practice that govern these collaborations,
Showcase recent trends in these relationships and activities to inspire the development of your own interactions with pharmaceutical companies,
Share ‘how to guides’ and toolkits from patient advocacy organizations similar to WAPO.

It should be noted that these patient/industry partnerships can take a variety of forms including funding for patient advocacy groups’ activities, clinical trial collaboration, patient education and awareness, policy advocacy, research and development collaboration, access and affordability initiatives, participation in advisory boards, transparency and communication, and regulatory engagement.

With this wealth of possibilities it is easy to imagine the many opportunities that can result from a successful collaboration between patient advocacy groups and pharmaceutical companies. However, guidelines must be in place to ensure that ethical standards are upheld and that transparency is maintained in all interactions.

Guidelines and Codes of Practice
To start, I will present some of the current guidelines and codes of practice used by the pharmaceutical industry when interacting with patient organizations. As I am based in the UK, I will first share the rules and regulations that apply here.
The Association of the British Pharmaceutical Industry (ABPI) is the trade association for over 120 companies in the UK. They have their own Code of Practice that outlines industry requirements, helping companies adhere to self-regulation principles and operate professionally, ethically, and transparently. They have also developed specific guidance and source book resources to drive the effective partnerships with patients and patient advocacy groups. One of their publications is entitled Working with Patients and Patient Organizations: A Sourcebook for Industry, and its aim is to “help pharmaceutical companies and patient organizations plan how best to engage and work together successfully”.

To help communicate these points more effectively, the ABPI collaborated with National Voices, a UK social care organization, to create the valuable document: Working together, delivering for patients: A guide to collaboration between charities and pharmaceutical companies in the UK. It outlines four main principles for collaboration to be followed by both parties: clarity of purpose (awareness of the planned goals or benefits), integrity (honesty and integrity should be upheld), independence (independence should be maintained) and transparency (disclosure of collaboration purpose and any exchange of funding).

Of course the scope of patient involvement in the research and development process can start as early as establishing research priorities and continues throughout the various evaluation and authorization steps of the regulatory process. The European Medicines Agency (EMA) has actively involved patients in the agency’s activities and these interactions are outlined in a document entitled, Engagement framework: European Medicines Agency and patients, consumers and their organizations.

Trends in patient engagement with industry

In the past 10 years, patient engagement with pharmaceutical companies has increased and, in some cases, patients are being involved at earlier stages of the drug development pipeline. Reducing barriers to patient engagement through the use of new technologies has also increased since the COVID-19 pandemic and has allowed for more collaboration to take place.
There is an excellent publication highlighting recent trends in the fast-evolving patient engagement & patient experience data landscape which has been created by Patient Focused Medicine Development (PFMD), a global collaborative and non-competitive coalition who strives to improve global health by co-designing the future of healthcare for patients WITH patients.

The paper, entitled Highlighting Recent Trends in the Fast-Evolving Patient Engagement & Patient Experience Data Landscape, provides a snapshot of current efforts and approaches that are helping to clarify regulatory and health technology assessment (HTA) expectations of patient engagement (PE) and patient experience data (PXD; evidence which captures the lived experiences of patients through a variety of patient engagement activities) across authorities in North America, Europe and Asia.

The trends outlined in this paper include:

• PE is becoming more prevalent in medicines development,

• The development and use of PXD represents a method to deepen patient engagement,

• PXD is being used increasingly by regulators and HTA bodies to help with decision-making.
Current regulatory and HTA guidance and approaches are being used to help set expectations and drive generation of evidence,

• The need for the definition of requirements is critical in providing patient experience data (e.g. the tools, purpose, users, timing, and impact). This definition will help to expand the development and utilization of patient experience data, thereby increasing its impact when it comes to healthcare decision-making,

• All stakeholders must adjust their procedures to optimize the usefulness of patient experience data and share the insights gained through patient engagement.

Clearly, listening to the patient’s needs and expectations is vital when it comes to increasing patient engagement with the pharmaceutical industry and for improving overall health outcomes.

In a recent publication entitled Co-creating with patients an impact framework across the medicine’s life cycle: a qualitative study exploring patients’ experiences of involvement in and perceptions of impact measures, 13 patient organization representatives were interviewed to give their insights and gather more details on previously defined patient engagement impact measures. The main areas for improvement identified in this study were 1) the need for additional qualitative context, such as patient quotes, satisfaction scores, and patient reported outcomes, 2) the need to define how patients influence the decision-making processes with direct feedback, and 3) the need to ensure that all terminology used is “patient-friendly”.

Another article published in 2023 and entitled Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review, highlights the need for guidance tools and policies that integrate both PE and PXD in regulatory and HTA processes. Currently, PE and PXD are often used in isolation rather than in combination. PFMD is currently working with multiple stakeholders on the co-creation of a framework for the integration of PE and PXD in regulatory, health technology assessment, and patient-centered healthcare systems.

While there is a growing momentum of including patients in medicines development at all stages, there is still much improvement to be made and policies to be put in place in order to ensure that patients’ valuable insights are used to their full potential.

‘How to’ guides and toolkits for patient organizations wishing to collaborate with pharmaceutical companies

I would now like to share several toolkits and resources that patient organizations can refer to when wishing to collaborate with the pharmaceutical industry.
The International Alliance of Patient Organisations, created the valuable resource entitled Working with Partners and Stakeholders Patients’ Organisation Toolkit. This was designed specifically to support patients organizations develop effective relationships with key stakeholders. It contains information and tools to help understand and overcome the challenges that they sometimes experience when working with external parties.

The European Patients Forum also created a report on the Added Value of Patient Organisations, which provides useful background information to support the positioning of a patient advocacy group.

The European Patients’ Academy on Therapeutic Innovation (EUPATI) offers an online toolbox as well as guideline documents that aim to help integrate patient involvement at all stages of the medicines research and development process with regulatory agencies, health technology assessment (HTA) bodies, ethics committees and the pharmaceutical industry.

Finally, I wanted to share a very practical and informative guide from the Axial Spondyloarthritis International Federation, entitled Working with the Pharmaceutical Industry. This guide covers such topics as how pharmaceutical companies can support your organization, how to connect with a pharmaceutical company, how to establish and build a relationship, the types of support the pharmaceutical companies can provide, the process involved with requesting funding and what to do once you have a grant.

These resources, along with the previous information mentioned, can really provide you with the catalyst to develop your interactions with pharmaceutical companies.

We thank Clive for this informative blog on a topic that is often difficult to navigate for many patient organizations. With these tools and resources we hope that your patient organization will have a better idea of how to initiate and steer meaningful collaboration with pharmaceutical companies. Remember that there are always benefits and challenges that come with these types of collaborations and they must be discussed in a transparent and open manner in order for a meaningful partnership to be established and maintained.


Working with Patients and Patient Organizations: A Sourcebook for Industry;
The Association of the British Pharmaceutical Industry (ABPI).

Working together, delivering for patients: A guide to collaboration between charities and pharmaceutical companies in the UK; National Voices and ABPI

European Medicines Agency (2014) EMA/637573/2014.

Patient Focused Medicines Development (PFMD). Highlighting recent trends in the fast-evolving patient engagement & patient experience data landscape.

International Alliance of Patients’ Organizations. (2011). Working with partners and stakeholders: Patients’ organisation toolkit. London, UK: International Alliance of Patients’ Organizations.

The European Patients Forum (EPF).  Added Value of Patient Organisations

Warner K, See W, Haerry D, Klingmann I, Hunter A and May M (2018) EUPATI Guidance for Patient Involvement in Medicines Research and Development (R&D); Guidance for Pharmaceutical Industry-Led Medicines R&D. Front. Med.5:270. doi: 10.3389/fmed.2018.00270

Gorbenko, O., Cavillon, P., Giles, R.H. et al. Co-creating with patients an impact framework across the medicine’s life cycle: a qualitative study exploring patients’ experiences of involvement in and perceptions of impact measures. Res Involv Engagem 8, 1 (2022).

Bertelsen, N., Dewulf, L., Ferrè, S. et al. Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review. Ther Innov Regul Sci 58, 63–78 (2024).


Navigating Nutrition and Pituitary Disorders

The New Year often starts with well intentioned resolutions. One of the most common resolutions involves improving our diet. While maintaining a healthy diet and lifestyle is a good goal for everyone, it is even more important for people with a pituitary disorder who are more susceptible to certain cardiovascular and metabolic complications.

This first WAPO blog of 2024 will cover how nutrition plays a role in the overall wellbeing of patients with pituitary disorders and will explore the intricate relationship that pituitary hormones play in maintaining our health.

The pituitary gland and its hormones

The pituitary gland, often called the “master gland”, is located at the base of the brain and controls several hormone glands by releasing hormones that are responsible for various bodily functions including growth and metabolism, water balance, reproductive health and our response to stress.

A disorder of the pituitary gland leads to either too little or too much of one or more of these important hormones being produced. One of the main causes of pituitary disorders is a pituitary adenoma, which is a benign tumor of the anterior pituitary. If the tumor is “functioning” (secretes hormones) it will lead to an excess of that hormone in the blood. For example, a pituitary adenoma that secretes adrenocorticotropic hormone (ACTH) will cause an increase in ACTH levels in the blood, which in turn stimulate the adrenal glands to produce excessive amounts of cortisol, resulting in Cushing disease. If the pituitary adenoma is “non-functioning” (does not secrete hormones) it may still disrupt the functioning of the pituitary gland and therefore the production of one or more hormones. Hypopituitarism is the term used when the pituitary gland is not producing (or producing only small amounts) one or more of its hormones.

Diet plays a major role in maintaining hormone health, with the food we eat having an impact on our hormones and consequently on the evolution of a pituitary disorder.

Nutritional recommendations for hormonal harmony

Each pituitary disorder is unique; however, there are some common nutritional recommendations that can be followed to ensure optimal health for everyone. Starting with:

  • Eating a healthy, balanced diet with a variety of non-processed foods including:
    • Whole grains for dietary fiber and complex carbohydrates such as brown rice and whole-grain bread;
    • Protein-rich foods (e.g. meat, fish, eggs, dairy or plant-based proteins);
    • healthy fats (found in nuts, seeds, and avocados)
    • Foods rich in essential vitamins and minerals such as calcium (in dairy products, salmon, leafy green vegetables) and vitamin D (in oily fish, egg yolk, fortified cereals) for bone health; iodine (in iodized salt and seafood) to maintain thyroid function; magnesium (avocadoes, seeds and legumes) as it plays a role in modulating the hypothalamic-pituitary-adrenal (HPA) axis; manganese (in nuts and leafy vegetables), as it is important for normal growth and reproduction; potassium (apricots, lentils, potatoes, tomatoes), which plays an essential role in cardiac function and regulates fluid balance, etc.
  • Reducing the amount of foods you consume that are high in refined sugars and sodium
  • Limiting your alcohol intake
  • Making sure to drink enough water (4-6 cups of water a day)

While there is no special diet for patients with a pituitary disorder, those at risk of certain complications related to their disease may benefit from adding or restricting certain foods from their diet. A recent study, for example, showed that a very low-calorie ketogenic diet and a low-carbohydrate ketogenic diet are effective in improving the metabolic and cardiovascular comorbidities seen in Cushing Disease (CD), when combined with conventional CD therapy.

There are several complications which have been associated with pituitary disorders, such as:

  • Obesity

While obesity is a problem in the general population, it is also associated with several endocrine disorders such as hypothyroidism, Cushing’s disease, hypogonadism, and growth hormone deficiency. Increased cortisol levels, as seen in Cushing’s disease, can cause weight gain. Monitoring of calorie intake may therefore be suggested in order to prevent weight gain and obesity. For more information on this topic watch the WAPO presentation Obesity, nutrition and latest insights by Professor Liesbeth van Roosen.

  • Osteoporosis

Osteoporosis is another complication of many pituitary disorders, including hypopituitarism, Cushing disease and acromegaly. Prolonged glucocorticoid use can also lead to reduced intestinal absorption of calcium and is a known cause of secondary osteoporosis. Adequate intake of calcium and vitamin D is therefore essential.

  • Cardiovascular comorbidities

Cardiovascular comorbidities such as hypertension, cardiomyopathy, heart valve disease and arrhythmias are also complications of certain pituitary disorders, such as acromegaly. A heart-healthy diet rich in fruits, vegetables, whole grains, lean proteins, omega-3 fatty acids and low in sodium can help manage blood pressure and may reduce the risk of developing cardiovascular complications.

  • Diabetes:

Diabetes type 1 is another possible complication of several pituitary disorders including acromegaly, prolactinomas, Cushing disease and growth hormone deficiency. Maintaining a healthy weight, keeping active and eating a healthy diet can help regulate blood sugar levels and prevent the onset of diabetes.

Other factors that have an impact on your hormones and overall wellbeing

  • Stress: Stress leads to the release of cortisol (the stress hormone) and chronic stress induces the redistribution of fat to the abdominal region which can counteract your healthy eating habits. Chronic stress is also linked to anxiety and depression as well as other chronic diseases. Try to reduce your stress levels as much as possible by practicing various coping mechanisms and relaxation techniques (e.g. meditation, journaling, etc).
  • Medications: Medications can have an impact on your hormones and your weight. Certain antidepressants, for example, can cause weight gain. Glucocorticoid replacement therapy, used to treat adrenal insufficiency, can also lead to unhealthy weight gain and metabolic perturbations by stimulating appetite and increasing preference for foods high in calories and fat. Talk to your healthcare provider about any side effects that you are experiencing (e.g. significant or unusual weight gain) so that the dosage can be adapted to your needs.
  • Sleep: Sleep deprivation is associated with increased levels of stress hormones, which affect metabolism and can lead to weight gain. Insufficient sleep can also worsen any fatigue you may already have, so aim to get 7 to 8 hours of sleep daily in order to feel well rested and at your best.
  • Physical activity: Regular physical activity helps maintain muscle strength and overall physical and mental health. It is also has anti-inflammatory effects and protects against stress-related disorders. Getting in 30 minutes of physical activity per day, 5 days a week is ideal. What’s most important is to avoid a sedentary lifestyle, so start moving your body with whatever exercise feels comfortable.

Finally, make sure to talk to your endocrinologist/dietician so that they can monitor your hormone levels and give you personalized nutrition tips that are tailored to your pituitary disorder and your individual needs. Everyone is different and maintaining close communication with your team of healthcare professionals is the best way to ensure optimal management and treatment for your condition.

Starting the year off right by eating a healthy and balanced diet may not be an original resolution but through informed decisions and proactive self-care, your unique nutritional roadmap can lead you towards an increased quality of life. And that is something we wish for everyone in 2024.

To learn about the various pituitary disorders, please refer to the WAPO website’s page on pituitary disorders.



Esteves, Gabriel P et al. “Nutritional recommendations for patients undergoing prolonged glucocorticoid therapy.” Rheumatology advances in practice vol. 6,2 rkac029. 21 Apr. 2022, doi:10.1093/rap/rkac029

Guarnotta V, Amodei R, Di Gaudio F, Giordano C. Nutritional Intervention in Cushing’s Disease: The Ketogenic Diet’s Effects on Metabolic Comorbidities and Adrenal Steroids. Nutrients. 2023 Nov 2;15(21):4647. doi: 10.3390/nu15214647. PMID: 37960300; PMCID: PMC10649442.

Ylli D, Sidhu S, Parikh T, et al. Endocrine Changes in Obesity. [Updated 2022 Sep 6]. In: Feingold KR, Anawalt B, Blackman MR, et al., editors. Endotext [Internet]. South Dartmouth (MA):, Inc.; 2000-. Available from:

Mazziotti G, Frara S, Giustina A. Pituitary Diseases and Bone. Endocr Rev. 2018 Aug 1;39(4):440-488. doi: 10.1210/er.2018-00005. PMID: 29684108.




Report from the 2023 WAPO Global Summit

The WAPO Global Summit is an annual event that brings the members of the WAPO community together. This year the summit took place from October 6-8th, at the Novotel Buenos Aires in the beautiful city of Buenos Aires, Argentina.

The three day event gathered more than 40 attendees, including 22 patient advocates from 19 countries (representing their WAPO member organizations), healthcare professionals and pharmaceutical representatives. Here is the report from the 2023 WAPO Global Summit covering all of the highlights!

Day 1 of the 2023 WAPO Global Summit: Patient advocates in the spotlight

The first day started in the afternoon with a welcome from WAPO board member Clive Deverson. Four different patient advocates and a Nurse then took the stage to talk about their personal experiences as a patient advocate, nurse and their best practices. One of those was WAPO Board Member Robert Brady, who shared his experience as a patient with craniopharyngioma (a non-cancerous tumor of the pituitary gland). As a result of removing the tumor, Robert lives with panhypopituitarism (deficiency of hormones produced by the pituitary gland) and has to take hormone replacement therapy (HRT). He shared how his personal experience with a pituitary disorder pushed him to become involved in patient advocacy as a volunteer for Pituitary Foundation Ireland and the various activities he participates in. Another presentation from this session included Alexandra Huayamave, a nurse from the Guayaquil Specialty Hospital in Ecuador, who shared how they support acromegaly patients.

After a quick coffee break, Sabrina Brignardello took the stage to give her talk on Clinical Trials & Access to Information. Sabrina works for Un Ensayo para Mí, the leading Spanish-language search engine for clinical trials in Latin America. She informed participants on how patients with pituitary disorders can participate in clinical trials and share these opportunities with their patient community in order to advance research. Participating in clinical trials is just one example of why patient organizations are vital to both patients and healthcare professionals.

A final presentation entitled Rediscovering my NGO, by Manuela Pelleri from Soy Paciente in Argentina, took place before the participants gathered for dinner in the conference venue’s dining room. This was the first opportunity for patient advocates as well as the various speakers and representatives from the pharmaceutical companies present to connect (or reconnect) and share ideas for the future. Many were familiar faces but first-time attendees had a chance to mingle and share their journeys with other patient advocates.

Day 2 of the 2023 WAPO Global Summit: Focus on diagnosis and care of pituitary disorders

Saturday morning kicked off with an informative presentation from Dr. Alvaro Campero, a neurosurgeon from Hospital Ángel C. Padilla in Tucumán, Argentina, on the topic of How do patients find the right place for treatment? This presentation highlighted the importance of educating all healthcare professionals on pituitary disorders so that patients can quickly be referred to an expert center for diagnosis as well as proper management and treatment of their condition.

After a quick coffee break, Dr. Chris Yedinak, who is an associate Professor at the Oregon Health & Science University in Portland, USA, gave a very comprehensive overview of growth hormone deficiency in adults and children. Participants learned the definition as well as the signs and symptoms of growth hormone deficiency. The causes of a growth hormone deficiency, meaning that the body produces insufficient amounts of growth hormone, were also discussed as well as the treatment.

Dr. Alvaro Campero then returned for a presentation on the evolution of pituitary surgery and current state of the art in the surgical treatment of pituitary tumors. This very educational session left participants with a greater understanding of the latest surgical techniques (and their benefits) for the treatment of pituitary tumors.

The 2023 WAPO Global Summit continued after lunch with an exciting presentation by Els Rutten, an endocrine Nurse from Gent Hospital in Belgium. As an endocrine nurse specializing in acromegaly and Cushing’s, Els set up a home education program for acromegaly patients in Belgium. It involves her travelling to the patient’s home in order to educate them on their condition and how to properly administer their treatment. Patients with acromegaly are often started on hormone replacement therapy (HRT) without many instructions or support. They may receive some explanations from a nurse at the time of their diagnosis, but others are left to figure it out on their own. Els shared several stories from patients who she had visited and described how it increased their satisfaction in the care received. All agreed that this sort of program would be beneficial to acromegaly patients everywhere and should be extended to other countries

Following a quick break for a group photo, the final panel session commenced with Clive Deverson talking about the rules and regulations followed by pharmaceutical companies wishing to interact with patient organizations and how successful patient-industry collaborations are formed.

Then Gretchen Jordan from The Cushing’s Support and Research Foundation (CSRF) gave an update on the Global Quality of Life Survey conducted by CSFR and supported by WAPO, which asked questions about diagnosis, treatment and quality of life of patients living with Cushing’s. She mentioned how participation increased once it was shared with 10 patient support groups on Facebook, showcasing the power of these private online support groups. The results from this survey will be published soon.

Chris Yedinak (US) and Els Rutten (Belgium) then spoke about the role of nurses in patient support. Finally, Robert Brady gave patient advocates his latest communication tips and tools to help reach more people via patient organization social media channels. It was a great way to end the first two days of the summit and participants.

Day 3 of the 2023 WAPO Global Summit: General Meeting and Training Program for Nurses

On Sunday morning the WAPO board and patient advocates from WAPO member organizations met for the WAPO Annual General Meeting. This interactive meeting was the opportunity for all patient advocates to discuss the accomplishments of 2023 and to go over the action plan for 2024.

At the same time as the WAPO General Meeting, the Training Program for Nurses took place, taught by Chris Yedinak. Five nurses from Argentina (including one sponsored by the Federation of International Nurses in Endocrinology (FINE)) had the chance to learn about nursing practices specific to pituitary disorders. Topics covered hormone physiology, prolactin and its link to infertility in both men and women and the importance of growth hormone. Each nurse left the training with a certificate of completion and new knowledge and skills that they can use in their daily practice. We hope to offer this training again in the future.

We would like to send a big thank you to our amazing sponsors: Recordati Rare Diseases and Ipsen (Gold Sponsors); HRA Pharma, Novo Nordisk and Crinetics Pharmaceutical (silver sponsors); and Ascendis Pharma (bronze sponsor).

Thank you also to the Federation of International Nurses in Endocrinology (FINE) who sponsored one nurse to attend the WAPO Summit Program.

Finally we would like to thank those who helped make the event run so smoothly with their organizational and interpretation support: CVENT Events (who designed the event’s website and mobile application), El Cuore, Officinia Linguistica interpretariato & Traduzione and Patricia Vega Cervino conference interpreters (who allowed for simultaneous English/Spanish translations of the presentations) as well as DlC Audiovisuales, who are currently  working on the presentations so that they can be shared on the WAPO website/Library.

Overall, the 2023 WAPO Global Summit was a huge success and we would like to thank everyone who attended or who made this important event possible. We can’t wait to see everyone again at next year’s WAPO Global Summit!

The presentations from the summit will soon be available on the WAPO website so stay tuned to our social media accounts so you don’t miss the announcement.



8 webinars to watch this Pituitary Awareness Month

October marks Pituitary Awareness Month, which is a great occasion to raise awareness and share information about pituitary disorders. One of the best ways to learn is by watching educational videos, so this blog article will focus on the 8 WAPO webinars to watch this Pituitary Awareness Month.

The WAPO webinar series has been designed by WAPO and is based on the most recent trends and topics of relevance expressed by the global patient community. Speakers are selected based on their expertise, their awareness of the value of patient engagement and their interest in improving access to medical information. All webinars are available in both English and in Spanish.
Here are the 8 WAPO webinars of 2023 that delve into a topic related to pituitary disorders and that can be shared with your community for Pituitary Awareness month.

1) Cushing syndrome – a cursory look into the past with Dr. Lewis S. Blevins, an endocrinologist and Director at the California Center for Pituitary Disorders in California, USA.

This webinar gives an excellent overview of hypercortisolism, a clinical state caused by excessive tissue exposure to cortisol and/or other related glucocorticoids, and the resulting Cushing syndrome. He starts by presenting the first identified cases of Cushing syndrome then goes on to share the diagnostic tests and diagnostic imaging techniques used throughout the years. This is followed by a history of the treatments of hypercortisolism, covering the surgical techniques (e.g. adrenalectomy), the medical therapies and the radiotherapy techniques.
Why you should watch this webinar: The medical advances made since the description of the first suspected case of Cushing syndrome in 1912 by Harvey Cushing until today are remarkable and very encouraging.

2) Health Technology Assessment, with Lindsey Weaver and Josie Godfrey from Realise Advocacy in the UK.

This webinar covers the step of the drug development process known as Health Technology Assessment (HTA), which is conducted to inform healthcare decision-makers about the potential benefits, risks, and cost-effectiveness of a medication. Patient involvement in this process is vital as they can share their unique insight in regards to their disease and what they wish to see in a treatment, all of which leads to better decision making. The webinar also covers how patient organizations can effectively participate in the HTA process in order to strengthen the impact of patient involvement.
Why you should watch this webinar: the importance of patient participation in HTA is becoming more and more evident and this webinar can give patient advocates and organizations a good starting point on how to navigate this often complicated process.

3) Mental Health and Acceptance after a diagnosis with Ignas Meskauskas, health and life couch and founder of Practical Wellness from Amsterdam, the Netherlands.

In this webinar, Ignas talks about the shock, doubt about the future, and uncertainty that patients receiving a new diagnosis of a pituitary disorder are all too familiar with. It also gives patients a roadmap on how to change their thoughts, behaviors and habits in order to change their experience with a pituitary disease.
Why you should watch this webinar: Ignas insists that a diagnosis shouldn’t define you and gives concrete actions that patients can follow in order to improve their quality of life.

4) Pain and Stress in Pituitary Diseases with Emilio Covarrubias, a physical therapist and acupuncturist, from Chile.

This webinar defines what stress is, how it is measured, the effect that acute and chronic stress can have on the body and the relationship between stress and pain. He then explains how the natural physiological responses to stress are damaged in patients with pituitary diseases and why it is therefore so important to manage stress in order to prevent further damage and complications.
Why you should watch this webinar: Stress is unavoidable but chronic stress is damaging to everyone, in particular patients with pituitary disorders. This webinar gives useful tips on how to better manage stress.

5) Depression and the Pituitary Patient with Linda Rio, a marriage and family therapist from California, USA.

In this webinar Linda gives a comprehensive overview of depression, including how to distinguish depression from apathy and how depression intercepts with endocrine disorders. She underlines how depression affects pituitary patients and their families and provides tips of how to support someone with depression.
Why you should watch this webinar: World Mental Health day is October 10th and patients with rare diseases, which include many pituitary disorders, have higher levels of depression than the general public. It is therefore very important to understand the unique challenges faced by patients with a pituitary disorder and their families in order to offer specialized support.

6) Clinical Trials with Dr. Alberto Pedroncelli, Chief Medical Officer at Camurus.

Dr. Pedroncelli, who is a leading expert in clinical development and medical affairs within the field of endocrinology and oncology, gives an overview of the different types of trials, the various steps of a clinical trial (from bench to bedside) and the special adaptations that have been made for rare diseases. This webinar will be released on the WAPO website on September 28th, 2023.
Why you should watch this webinar: Clinical trials are a crucial step in the process of drug development. Having knowledge of the basics of clinical trials is the first step in ensuring patient engagement and involvement, which benefits not only patients but also researchers and the industry.

7) Transition from pediatric care to adult care: we mind your step with Kirsten Davidse, a nursing specialist from Erasmus University Medical Center in Rotterdam, the Netherlands.

This webinar will give an overview of the preparation and planning involved in a successful transfer of care of an adolescent patient from a child-centered to an adult-oriented healthcare system. This webinar will be released on the WAPO website on October 26th, 2023.

Why you should watch this webinar: This is a very important phase in a patient’s life that needs to be properly planned and supported in order to ensure that the complexities of pituitary disorders are properly handled and that there is a continuity of care.

8) Finally, the last webinar of the year will be entitled Growth Hormones in Adults & Children with Dr. Christine Yedinak, a family nurse practitioner from Oregon Health and Science University, in Portland, USA. It will be released November 30, 2023 and you can expect a comprehensive review of this important topic.

We hope that you will watch one or more of our webinars this Pituitary Awareness Month. Take the time to learn about pituitary disorders, share WAPO resources with your friends, family and your general practitioner and raise awareness in any way that you can for these endocrine disorders. When pituitary disorders are quickly recognized by healthcare professionals, patients can receive a diagnosis and specialized treatment in a timely manner. And we all know that early diagnosis and treatment leads to better patient outcomes.

While we aim to raise awareness for all pituitary disorders in October, Pituitary Awareness Month 2023 is shining a spotlight on prolactinomas. Prolactinomas are prolactin-secreting tumors of the pituitary gland. If you would like more information about this specific condition, WAPO has a dedicated page with valuable information on this rare disease. Another page of the WAPO website provides a list of pituitary disorders for you to explore.
By participating in Pituitary Awareness Day you are showing your support to all patients with a pituitary disorder.
Find a list of all the WAPO webinars (including webinars from previous years), in the WAPO library here:

Juggling care and daily life: The balancing act of the rare disease community. A Rare Barometer survey. May 2017.
Economist Impact: Connecting the Dots: Embedding Progress on Rare Disease into Healthcare. 2022
Sbardella E, Pozza C, Isidori AM, Grossman AB. ENDOCRINOLOGY AND ADOLESCENCE: Dealing with transition in young patients with pituitary disorders. Eur J Endocrinol. 2019;181(4):R155-R171. doi:10.1530/EJE-19-0298

Why patient organizations are vital to both patients and healthcare professionals

“Guest post by Natasha Barr – Caretently Health Communications, upon invitation by WAPO”


Being diagnosed with a pituitary disorder has a huge impact on a person’s life. The fact that many pituitary disorders are equally rare diseases only adds to the feeling of isolation that many patients may experience. Patient organizations aim to break that isolation by providing invaluable support, however, their role goes far beyond this one mission. Patient organizations provide a variety of valuable services to both patients and healthcare professionals and play a significant role in improving patient management and care.

This article covers the importance of patient organizations and the patient advocates that represent them.

Pituitary disorders are a group of disorders affecting the pituitary gland. This “master gland”, located at the base of the brain, makes important hormones that act on other glands and play a role in many vital functions such as growth, development, sexual maturation, reproduction, blood pressure control and metabolism. Pituitary disorders can have many causes (most commonly benign tumors) but they result in patients making too much or too little of these various hormones, leading to a large variety of symptoms and requiring multidisciplinary lifelong care. A patient organization is therefore a valuable partner to patients throughout their patient journey.

Patient organizations are first and foremost for the patients and their carers. The European Medicine’s Agency defines them asnot-for-profit organizations which are patient focused, and where patients and/or carers (the latter when patients are unable to represent themselves) represent a majority of members in governing bodies”. With that now clarified, let’s take a look at how these passionate patient advocate groups make a difference.                                   

Many patient organizations offer dedicated support groups. Whether they are in person (e.g. via local meet-ups) or online (e.g. via Facebook groups), they are a much needed safe space for patients looking for information, guidance and support. Speaking and connecting with others living with the same condition is highly beneficial to patients and their families. These groups can lead to new friendships and give patients a much needed feeling of community. An example is the Ireland Pituitary Support group on Facebook, which has over 300 active members. Keep in mind that when it comes to Facebook groups, it is always a good idea to check if the group is moderated by a member of a recognized patient organization. This ensures that a set of community rules will be enforced and no misinformation will be shared.

Another role of patient organizations is one of raising awareness. As pituitary diseases are relatively unknown and can often present with non-specific symptoms, patients may wait years before receiving an accurate diagnosis. This delay in diagnosis leads to a delay in treatment and an increased risk of complications and a decreased quality of life. Patient organizations try to raise awareness for their rare disease(s) so that the medical community and the general public are more aware of the symptoms and warning signs. Awareness days, where information is shared on social media accounts, or public outreach campaigns, which aim to reach the masses and spread knowledge are both actions initiated by patient groups. Some great examples from the pituitary disease community include Acromegaly Awareness Day on November 1st and Cushing’s Awareness Day on April 8th.

Patient organizations produce educational resources on the diseases they cover that are scientifically validated by medical experts. If you type the name of a disease in Google, anything can pop up! This can lead to unnecessary distress and confusion. However, resources produced by a recognized patient organization can be trusted. They usually have a medical advisory board or collaborate with medical experts in order to produce accurate and comprehensive information on a given health topic. This information is also presented in a language that is easy to understand (i.e layman’s terms) and in the local language. WAPO, for example, has produced webinars on a variety of topics including depression in the pituitary patient, pain and stress in pituitary diseases and many more, which can be found in the WAPO library. There is also educational information on the various types of pituitary disorders on the website.

In addition to what they bring to the lives of patients, patient organizations collaborate with and help healthcare professionals.                                             

Patient organizations can provide healthcare professionals with a roadmap for how to engage with patients in order to improve patient-clinician relations. They bring both the patients’ and their carers’ perspective to the table and provide insights that clinicians may not automatically consider. They may offer helpful suggestions, such as encouraging the patient to bring a family member or friend with them into the consultation. This allows for patients to have someone else listening and noting down the important facts given by the doctor, as one can often feel overwhelmed and forget what was said during the initial consultations. They stress the importance of showing empathy and truly listening to the patients and their needs. These tips can lead to a more trusting relationship between patients and clinicians.


They can also provide healthcare professionals with educational material for their patients. As mentioned above, the informative resources produced by the patient organization and validated by the healthcare professionals can be used directly by the healthcare provider. They can then be given to patients at the time of diagnosis so that they have written information to take home with them. They can provide expert centers with posters for their waiting area or flyers which can be given to patients at the end of their consultations.

Having a patient organization for a disease or group of diseases allows clinicians to refer their patients to these groups for support along their patient journey. Knowing that a patient organization exists for their disease reassures the patient that they are not alone. The patient organization can ensure that all of their questions are answered once they have had time to digest everything. Having a full understanding of the disease makes a patient more likely to adhere to a treatment protocol and to recognize signs of any life-threatening complications.

They can equally support research by informing patients of new research studies or clinical trials and by helping healthcare professionals find enough patients to participate in these studies. As the majority of pituitary disorders are rare diseases, research is often limited by insufficient patient numbers. By finding and reaching out to new patients, patient organizations can keep them up to date of new studies and clinical trials so that they can participate if they wish. They may even provide research grants to teams investigating new therapies for their disease. Setting up registries with healthcare professionals so that patients can be found for research purposes is another possible activity. Patient advocates are equally solicited during the development process of new treatments. One thing is for sure: without the participation of patient groups, research cannot advance.

Patient organizations partner with clinicians when creating Patient Reported Outcome Measures (PROMs), which are a set of measures used to assess care delivery and treatment efficacy. These measures should reflect the patients’ desired outcomes, so it is vital to have them involved. This was the case when the PROMs for patients undergoing transsphenoidal surgery for a pituitary adenoma were created. They were developed with the input of patient advocates from the Pituitary Foundation.

An equally important activity is strengthening the relationships between patient advocates and healthcare professionals via meetings or congresses. Healthcare professionals can share their latest research and patient advocates can ask the burning questions of the patient community they represent. Patient organizations often organize these types of multi-stakeholder meetings, which are highly beneficial to all that attend. The upcoming WAPO Global Summit 2023, which will take place in Buenos Aires, Argentina from October 6-8th, 2023, is a prime example of an event that allows for patient advocates from member organizations to come together and share best practices while also learning about the latest medical developments by top experts in the field of pituitary disorders.

Finally, let’s not forget that patient advocacy efforts are at the root of social change in the healthcare system. Patient organizations have an active role in driving change. Some great examples in the field of rare diseases include the various national rare disease plans (such as the national plan for rare diseases, or PNMR, in France which was created in 2004 and which has been renewed twice since), the launch of the European Reference Networks (and their European Patient Advocacy Groups or ePAGs) in 2017 and the first UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families, which was passed in 2021. All are a direct result of the active participation of patient organizations and alliances fighting to improve the lives of rare disease patients.

So let’s remember all the valuable work that patient organizations and their patient advocates do every day. If you can, show them your support through volunteering, donating or sharing the news about their activities. They give their valuable time to support others in addition to dealing with their own chronic disease and its daily challenges. Together with healthcare professionals and all other stakeholders, patient organizations work to support and educate, eliminate barriers to care, promote health equity, and drive systemic changes that benefit all of society.

To see a list of WAPO’s member organizations, take a look at our member page here:



Cortial L, Nguyen C, Julkowska D, Cocqueel-Tiran F, Moliner AM, Blin O, Trentesaux V. Managing rare diseases: examples of national approaches in Europe, North America and East Asia. Rare Disease and Orphan Drugs Journal. 2022; 1(2): 10.

Karvandi, Elika et al. “A patient-reported outcome measure for patients with pituitary adenoma undergoing transsphenoidal surgery.” Pituitary vol. 25,4 (2022): 673-683. doi:10.1007/s11102-022-01251-x

Ireland Pituitary Support:

The road to hydrocortisone pump treatment

A story on the experiences with a hydrocortisone pump by Laila Erntnes, director at the Norwegian Morbus Addison association.

I have used my hydrocortisone pump for about five years, and cannot imagine a life without it. In fact, the thought of having to do without it makes me quite anxious as I don’t want to go back to the state I was in, before I started using it. Well over a year ago, the rules for the use of Solu-Cortef were changed in a number of countries, including in Norway. From having been able to use the same solution for three days, it was now only usable for one day! This was determined through a dialogue between the pharmaceutical industry and the health authorities in the various countries. Therefore, it may differ from country to country. The risk of bacterial growth is present and therefore care is taken not to have the diluted solution left out too long.

This change in regulations made the doctors in Norway conclude that it was too strenuous and financially irresponsible to use a pump. For those of us using a pump, this meant that it had to be changed and filled with new hydrocortisone solution every day. A very important information in this regard is that the medicine Solu-Cortef had not changed (there were rumors that some substances had been withdrawn), but the reason is that the health authorities started using new criteria. These criteria are different depending on which country you live in. If you live in the USA, Solu-Cortef can still be used within three days, if you live in Norway or Sweden, Solu-Cortef it must be used in one day. If you are unlucky enough to live in Denmark, Solu-Cortef must be used within 6 hours. And remember, it is exactly the same medicine.

When this news first hit me, I was afraid I would have to stop using the pump. Fortunately, those of us who had already started treatment with a pump were allowed to continue and to change the solution every three days at our own risk. It was no longer something that the doctors could recommend, as they would be going against the Norwegian health authorities. As I have had such a good experience with the pump, I happily continue with the pump and still change it every three days. I don’t notice that my daily health is worse on day three, so I don’t see the need to switch it after only one day.

I think it is very unfortunate that these new regulations result in fewer people being allowed to try this form of treatment. It was already difficult enough to get doctors to agree to let us try it before. Now, it is almost impossible for new people to have access to hydrocortisone pump treatment.

For someone like me, who has experienced such positive effects with the pump, I find this tragic. However, pump treatment is not for everyone. If you think your day goes well with tablets, then it is a good treatment option for you. Pump treatment is for those who experience unstable yo-yoing levels of cortisol during the day with tablets. Or for those who experience severe symptoms where it might be worth trying another treatment to see whether it can improve quality of life. I don’t think we should just accept that life is difficult, without first getting to try the other possibilities that exist.

When I started using hydrocortisone after having surgery to remove my adrenal glands, I started with tablets three times a day. This is the most common treatment. I felt that I functioned very poorly in everyday life. Quite quickly after taking a tablet, I experienced overdose symptoms such as restlessness, hot flashes and rapid breathing. I could sit completely calmly on the sofa and suddenly turn completely red in the face and feel hot. I also experienced this when I had Cushing disease. Despite the restlessness, I had to lie down for about an hour, due to a strong sense of illness. Then I had a couple of hours where I felt okay, before I experienced the symptoms of low cortisol, with feelings of nausea and weakness. Then it was time to take another tablet – only to get overdose symptoms again. It was a real roller coaster during the day. Because of this, I got to try Plenadren (slow release). It was a big disappointment. I was very tired all day. Everything became a struggle, and I could not function properly as a mother, which is of course very important when you have three children. Adrenal insufficiency patients must try Planadren for at least three months before they can conclude whether it works or not. Some have succeeded in persevering for six months before the Plenadren has had a positive effect. I gave up after three months.

At this point I went to a doctor in my own town that had actually retired. He was a good listener, understanding and solution-oriented. In addition, he was respected in the hospital and was not afraid of reprisals from the hospital management, so he started me on hydrocortisone pump treatment as his first patient. Pump treatment is considered the most expensive treatment. I had to attend a training meeting with a representative of the pump manufacturer. The training lasted two hours and there was a lot to remember. I’m glad I had my husband with me, who is a little more patient in understanding new technology than I am.

It is common to set up four or five dosage times of hydrocortisone throughout the day when using the pump. The pump starts by increasing the influx of hydrocortisone at four o’clock in the morning. Then there is a higher dose that starts at eight o’clock. A slightly lower dose is given again from twelve o’clock (noon), and then finally at six o’clock in the evening. This dose lasts until four in the morning. Note that there is never a break in the supply of hydrocortisone in the body. The supply of hydrocortisone is around the clock, but in different amounts depending on the time of day. For those of you familiar with insulin therapy, which the pumps are usually used for, this is what is called the basal dose. Those with diabetes administer an extra dose of insulin at meal times, in addition to the basal insulin dose. This extra dose, which is given quickly, is called a bolus. Those of us using hydrocortisone can also administer a bolus when we require an extra dose, for example, during stressful events or intense effort.

Getting a pump was a salvation for me, although not right away … The doses that the endocrinologist had suggested to use in the pump had to be slightly adjusted. It took a few months of trial and error to find the right dose. It is common that you need less hydrocortisone when using a pump, but here you can only compare yourself to yourself. I seem to require more than what I have heard other pump users need. It is probably due to my original diagnosis of Cushing disease, caused by a pituitary tumor. I went many years undiagnosed where my body produced too much cortisol. This has probably caused my body to need slightly higher amounts of hydrocortisone to function. My daily dose is 41.6 ml of Solu-Cortef.

There are several manufacturers of pumps, all of which are used for insulin pump therapy. Today I use OmniPod which is the one without a tube. I started with Medtronic which has a tube. It wasn’t a big problem. The advantages outweighed the disadvantages of the tube, but now that there is a tubeless option, I think it is best. I can bathe, shower and do whatever I want without having to take the pod off. It also comes with a remote control.

At this time, I have stable days and experience a great degree of mastery over my everyday life compared to the first years prior to using the pump. I still have some quiet days, where I need good breaks, but it is now easier to do more of what I have to do and more of what I want to do.

As you can see, I perhaps struggled more than many with tablets that provided unsatisfactory results, and it is for this patient group that hydrocortione pump treatment may be relevant. I keep hearing stories from patients with adrenal insufficiency who have tough days and I wish more people were allowed to try it. We must not only survive, but also have mastership over our everyday lives and participate in family life and perhaps even work.

My big wish is that hydrocortisone pump treatment becomes more common in the treatment of adrenal insufficiency. I believe that this will lead to many more patents having an increased quality of life.

Laila Erntnes,
Norwegian Morbus Addison association
















Webinar on ‘Hypercortisolism’ by Dr Blevins Jr

April 27, 2023: ‘Depression and the pituitary patient: support for them and yourself’ by Linda Rio (Marriage & Family Therapist (MFT)

May 25, 2023: ‘Health Technology Assessment‘ by Realise Advocates

Doctors, teach your adrenal insufficiency patients well …

In the autumn of 2021, it appeared to be a need among the participants in the ENDO-ERN cooperation(*), especially within the Main Thematic Group of the Adrenal glands, to know how in Europe the well-known adrenal stress schedule(**) is used in daily life of the adrenal patients.
Also, we wanted to know in how many cases the right recommended emergency measures can be taken by patients and their carers, relatives in the various countries.
A survey for this purpose was then sent out in collaboration with Endo-ERN, AdrenalNET and the Dutch Adrenal Society NVACP across Europe in the participating European countries.
The survey was sent to nearly 300 people. The survey was completed by 183 people, the results of which gave us all quite a wake-up call.
The results, as shown on a poster at the Milan ECE meeting in May 2022, were shocking. This result gave energy to the authors to start writing the article below.
We wish you much reading pleasure and hope that you, too, will ensure that those receiving cortisone substitution are trained in a timely manner, thanks in part to you, to avoid getting into a dangerous crisis. After all, through proper training and an appropriate action by the patient and his/her family, colleagues & friends, it is no longer normal anno 2023, to bring Adrenal patients into danger.

Johan G. BEUN

Doctors teach your patients well – JB et all



WAPO Website & 2023 Webinar Series

“Your diagnosis doesn’t have to define you!”  ….. well-spoken words by Ignas Meškauskas, Mental Health Coach in the Netherlands.. Ignas kick-started our WAPO 2023 Webinar series, with this impactful session entitled “My new identity after diagnosis”, with invaluable content for anyone with a diagnosis of a pituitary disease or long-term condition. ‘Acceptance’ is the keyword in this webinar and Ignas shares a lot of his own experience and supportive ideas that will help people with any diagnosis to accept their new reality.

We met Ignas last year at the WAPO Global Summit in 2022, where he translated for his Lithuanian friend . During the event, he became more and more involved with the speakers and delegates and with his knowledge and the benefit that he can bring to our community, he prepared his presentation for the 2023 webinar series.

The set-up for our series of 9 webinars in 2023 is different from 2022. This year, the webinars will be pre-recorded and released on the WAPO website, roughly each month (except for Summer and December).
We received requests from the WAPO pituitary community about the different time zones and availability of the webinars to share with other members and we feel that this new approach will solve this issue. The webinars will be made available– in English and Spanish – directly from the WAPO website, in the Library section, and in open access. You will find the direct links below the article as well as the planned webinar topics for the year.

You may also have noticed that the WAPO website has had a make-over in the past 6 months, and is available from 27th January onwards, via (same address, new content!).
The Pituitary Disease section has been completely refreshed, with updated information and accompanying animated videos, which explain the diseases and treatment in an easy, engaging way. This has been made possible by the Federation of International Nurses in Endocrinology (FINE), with special thanks to Christine Yedinak!

Currently, we are looking for additional disease, or health and exercise content to add to our specific website pages, e.g. research outcomes, clinical trial information, etc.
Please feel free to send any information that you feel would be of interest to the community to and we will be happy to include on the website. The content doesn’t have to be in English but in any other language.

Discussed topics: 

Release Date 2023: TOPIC
January 27, 2023 Mental Health Support after Diagnosis
February 28, 2023 Pain in Pituitary Disorders
March 30, 2023 Hypercortisolism – History and Future
April 27, 2023 Transition – from Child to Adult Treatment
May 15, 2023 Hormones
June 29, 2023 Growth Hormone
September 2023, TBC How to Support a Depressive Patient
October 2023, TBC Medication Waste
November 2023, TBC Clinical Trials




Maternal Pituitary Support – An Introduction