New: “Walk with WAPO” video for Cushing’s Awareness Day

April 8th is Cushing’s Awareness Day and to mark the occasion, we are thrilled to release a new awareness video entitled “Walk with WAPO through the experiences of people living with Cushing’s disease.”

Watch it here: Walk with WAPO through the Experiences of People Living with Cushing’s disease 

Cushing’s syndrome occurs when the body produces too much cortisol. This is often due to a pituitary tumor that secretes excess adrenocorticotropic hormone (ACTH), in which case the condition is specifically referred to as Cushing’s disease.

In this latest “Walk with WAPO” video, we bring together the voices of eight patient advocates who openly share their journeys. They were asked to answer a series of questions, ranging from what their first symptoms were to their concerns for the future, and this video is the compilation of their replies. Their powerful stories are accompanied by expert insights from Dr. Noa Tal, endocrinologist at the Pacific Neuroscience Institute, who explains the medical aspects of this complex condition.

Structured into chapters, the video offers a comprehensive look at what it is really like to live with Cushing’s disease.

We would like to thank our amazing patient advocates (Claus, Caz, Gretchen, Gunnvor, Malini, Nicky, Rachel, and Stephane), for sharing their experiences, and to Dr. Noa Tal for her medical perspective.

We would also like to thank H. Lundbeck A/S for kindly sponsoring this video.

We hope this video will be widely shared, helping Cushing’s disease gain greater recognition both within the medical community and among the general public. It is only through increased awareness that can we shorten the time to diagnosis and improve long-term outcomes for patients and their families.

Nuevo vídeo “Camina con WAPO” para el Día de Concienciación sobre el Cushing

El 8 de abril es el Día de Concienciación sobre el Cushing y, para celebrarlo, estamos encantados de publicar un nuevo vídeo de concienciación titulado “Camina con WAPO a través de las experiencias de personas que viven con la enfermedad de Cushing“.

Puedes verlo aquí: “Camina con WAPO a través de las experiencias de las personas que viven con la enfermedad de Cushing”

El síndrome de Cushing se produce cuando el organismo produce demasiado cortisol. A menudo se debe a un tumor hipofisario que segrega un exceso de hormona adrenocorticotrópica (ACTH), en cuyo caso la afección se denomina específicamente enfermedad de Cushing.

En este último vídeo de “Camina con WAPO”, reunimos las voces de ocho defensores de pacientes que comparten abiertamente sus experiencias. Se les pidió que respondieran a una serie de preguntas, desde cuáles fueron sus primeros síntomas hasta sus preocupaciones de cara al futuro, y este vídeo es la recopilación de sus respuestas. Sus conmovedoras historias van acompañadas de las opiniones expertas de la Dra. Noa Tal, endocrinóloga del Pacific Neuroscience Institute, quien explica los aspectos médicos de esta compleja enfermedad.

Estructurado en capítulos, el vídeo ofrece una visión completa de lo que significa realmente vivir con la enfermedad de Cushing.

Queremos dar las gracias a nuestros increíbles defensores de los pacientes (Claus, Caz, Gretchen, Gunnvor, Malini, Nicky, Rachel y Stephane), por compartir sus experiencias, y a la Dra. Noa Tal por su perspectiva médica.

También queremos agradecer a H. Lundbeck A/S por el amable patrocinio de este vídeo.

Esperamos que este vídeo se difunda ampliamente y contribuya a que la enfermedad de Cushing adquiera un mayor reconocimiento tanto en la comunidad médica como entre el público en general. Sólo mediante una mayor concienciación podremos acortar el tiempo hasta el diagnóstico y mejorar los resultados a largo plazo para los pacientes y sus familias.

—

 

Survey ‘Arginine VasoPressin Deficiency’ for Health Care Professionals

Many individuals with pituitary or adrenal disorders are affected by AVP-D, yet their treatment is frequently inadequate due to a lack of awareness.
To enhance understanding and visibility, we need your help in resharing this information! Please share it with your members and encourage them to pass it along to their healthcare professionals, nurses, pharmacists, and other relevant stakeholders.
Below, we have provided text for you to use in your email or social media posts:

🧑🏽‍⚕️ Health Care Professionals: We Need Your Input! 📢

In 2022, the Endocrine Society and the global ‘Working Group for Renaming Diabetes Insipidus’ recommended a name change from diabetes insipidus (CDI) to Arginine Vasopressin Deficiency (AVP-Deficiency, AVP-D) in order to better reflect the condition’s pathophysiology and avoid confusion with diabetes mellitus.

But has this change been widely adopted in clinical practice? Is there still confusion between the two terms in 2025? Do healthcare professionals and patients understand how to safely manage AVP-D and desmopressin (and avoid complications like hyponatremia and hypernatremia)?

🌎 This global survey aims to find out!

We wish to gather insights on how AVP-Deficiency is understood, diagnosed, and managed across specialties (both endocrine and non-endocrine). Your participation will help improve patient education and clinical practices for this rare condition.

The survey takes just a few minutes, and your responses are anonymous. You can reply to the survey here: https://feedback.surveylab.com/92c/HCP/AVP-D/SURVEY/

Your time and effort is greatly appreciated: by answering our survey you will be helping us to improve AVP-D awareness and patient safety! 🤝

And please share with your network so that we can reach the maximum number of healthcare professionals possible!


Additional Information on Outcomes Patients Survey, presented by Dr. Cihan Atila (Neuro-endocrinology group at Basel University, Switzerland) during the WAPO Global Summit 2024:
English:
https://www.wapo.org/library/ws24-avp-d-diabetes-insipidus-study-outcomes-and-more-c-atila-clin-neuroendocrinology-university-basel-switzerland/
Spanish:
https://www.wapo.org/library/ws24-spa-avp-d-diabetes-insipidus-study-outcomes-and-more-c-atila-clin-neuroendocrinology-university-basel-switzerland/

Are you a person living with Cushing’s disease? Or an HCP caring for people with Cushing’s disease?

Then this is an opportunity for you to share YOUR thoughts on the Cushing’s disease journey and its unmet needs. The purpose of this survey is to help research to understand the experience of people living with Cushing’s Disease and the views of healthcare providers in the topic.

For people living with Cushing’s or patient representatives:

For Health Care Professionals:
In English:  https://www.surveymonkey.com/r/CushingHCP

We can only accept answers from people living in the following countries: Austria, Australia, Chile, Denmark, France, Ireland, Italy, Netherlands, Norway and United States of America.

This survey was co-created by ‘WAPO‘, Lundbeck, and Red Thred Solutions.

Walk with WAPO through the Experiences of People Living with Acromegaly

We are happy to announce the release of our new acromegaly awareness video entitled “Walk with WAPO though the experiences of people living with acromegaly”. This video was created for Acromegaly Awareness Day, which takes place on November 1st.

Watch it here: Walk with WAPO through the Experiences of People Living with Acromegaly
This project was made possible thanks to the generous participation of nine patient advocates who replied to our acromegaly survey back in September. They were then contacted and sent questions to answer by video. The resulting video is a compilation of their answers.

They cover many topics such as their first symptoms, their path to diagnosis, their treatment, and the impact of acromegaly on their lives and those of their family, to name a few.

By the end of the video you should have a better understanding of this rare pituitary condition and how it affects those living with it. No two stories are alike, but all wished for an earlier diagnosis and adapted treatments that will improve their quality of life.

A special thanks to David, Donna, Jeremie, Marell, Marie Louise, Martin, Mayulabis, Roz, and Sandra, the faces and voices of of this video, for their courage in sharing their stories.

We hope that you will share this video in order to raise awareness for acromegaly. Not only on November 1st, but all year round.

How participation in labour could be a challenge for pituitary or adrenal patients

What should happen if an employee with a pituitary or adrenal disorder is unable to continue fulfilling their job responsibilities?

This question has been posed to patient organizations and AdrenalNET over the past few years. Additionally, how can we assist patients who have lost their jobs due to such disorders? What key information should employers understand when they encounter an employee who can no longer perform their current role?

In 2020, AdrenalNET initiated a Dutch project that involved all relevant stakeholders to explore options, possibilities, and essential information for employers, employees, insurance doctors, caregivers, and others.

The project, named ‘Participatie in Arbeid,’ was launched in the Netherlands in 2020. It focuses on addressing the support needs of patients with pituitary and adrenal disorders —whether they are still working or have had to stop due to their conditions — while also serving as a guide for employers, insurance providers, and occupational health physicians on how to assist these employees.

During several meetings with stakeholders, the core group thoroughly discussed and elaborated on various topics and details, resulting in the following products:

  1. A specialized website on labour issues, providing information to all stakeholders: https://www.werkwijzer.online/
  2. Three informative documents on Cushing’s syndrome, adrenal disorders and pituitary diseases. See: https://www.werkwijzer.online/speciaal-voor/hypofyseaandoeningen/
    Translated in English are:
    20240501 factsheet cushings syndrome UK
    20240501 factsheet pituitary disorders UK
  3. The establishment of a “Buddy Support Group for Work-related Questions” at the patient associations “Bijniervereniging | Dutch Adrenal Support Group” and “Nederlandse Hypofyse stichting’.
  4. Presentations at meetings for Dutch endocrinology (DEM).
  5. Presentations aimed at other relevant stakeholders, such as the UWV and others.

The project was financially supported by ZonMW, Netherlands

Please Note:
The attached fact sheets have been developed for the Dutch situation, including relevant regulations and advice.

Awareness for Pituitary diseases in October


WAPO will raise awareness for four pituitary disorders through infographic posters and social media carrousels in 2024.
The 4 posters focusing on Arginine VasoPressin deficiency, Cushing’s, Adrenal Insufficiency and Acromegaly will be released during October 2024, Pituitary Month.
Please also think of Acromegaly Day on November 1st!
On WAPO’s social media, you will also find carroussels with disease related information

Release dates: 
October 1: Arginine VasoPressin deficiency
2024 WAPO Awareness – Arginine VasoPressin deficiency – Diabetes Insipidus

October 8: Cushing’s Disease – 2024 WAPO Awareness – Cushing’s disease

October 15: Adrenal Insufficiency –
2024 WAPO Awareness – Adrenal Insufficiency – Addison’s Disease

October 22 – Acromegaly – 2024 WAPO Awareness – Acromegaly

Kindly share this message to increase awareness among individuals living with pituitary disorders and their families.

Dreams Survey – Understanding Sleep Quality in Patients with Pituitary Disorders (with a Focus on AVP Deficiency/Diabetes Insipidus)

This anonymous survey is conducted by the research team of Prof. Mirjam Christ-Crain in Basel, Switzerland. The goal is to better understand how pituitary disorders, especially AVP deficiency (also known as Diabetes Insipidus), affect sleep quality. Although treatment options exist, many patients still face sleep difficulties, and we aim to learn more about these challenges.

The survey is designed to help us gain a clearer picture of sleep problems in people with pituitary conditions, enabling us to develop further research in this area. It is completely anonymous, and no personal data will be collected beyond your survey responses. The survey only takes 5-10 minutes to complete, and your answers will be stored and analyzed confidentially. The findings will be shared in medical literature and on patient representative platforms.

Additionally, the survey will explore how sleep quality and sexuality impact overall well-being. A few optional questions about sexuality will be included at the end, which you may choose to skip if you prefer. Your participation, whether you choose to answer all the questions or just some of them, is highly valued and will contribute to a deeper understanding of the quality of life for patients with pituitary disorders.

The survey is available in English and German.

If you are interested to participate in the study, please click here:  https://redcap.dkfbasel.ch/surveys/?s=KNJHNN7WEDCMJYFL

International Hypothalamic-Pituitary Brain Tumors Patient Registry

The Raymond A. Wood Foundation (RAWF), in collaboration with the National Organization for Rare Disorders (NORD®), is thrilled to announce the launch of the International Hypothalamic-Pituitary Brain Tumors Patient Registry. The registry provides a unique platform for patients worldwide to unite their voices and share essential information about rare hypothalamic-pituitary brain tumors, to advance research and guide the development of treatments for critical unmet needs of our community.

The web-based and secure registry consists of a series of longitudinal surveys to gather information from patients or caregivers/legal representatives on the natural history of rare hypothalamic-pituitary tumors, including demographics, health challenges, diagnoses, medical history, hunger behavior and other disease-related information.

RAWF is building the registry in stages around research projects. At this time, the registry is focused on craniopharyngioma and will include other hypothalamic-pituitary brain tumors in the future. The current registry study aims to collect data from patients or caregivers to better understand and characterize hunger, appetite and eating environment of individuals with craniopharyngioma, including hypothalamic obesity.

De-identified, aggregated data from the Registry will be shared with academic and industry collaborators conducting research and/or clinical trials on new therapies. Third parties will be granted access to de-identified Registry data according to the guidelines of the Hypothalamic-Pituitary Brain Tumors Patient Registry Advisory Board, and an independent IRB providing ethical oversight for Registry activities.

For more information on how to participate or learn more about the Hypothalamic-Pituitary Brain Tumors Patient Registry, visit https://hptumorregistry.iamrare.org or www.rawoodfoundation.org/HPTumorRegistry/.

Thanks in advance for your help in supporting our mission.

 

Survey Arginine VasoPressin Deficiency | Central Diabetes Insipidus | Histiocytosis

 

Your action counts!

You have a fabulous opportunity to help the medical community as well as patient support organizations learn about the experiences, challenges and support needed by people with AVP-Deficiency/Central Diabetes Insipidus (AVP-D/CDI) and Histiocytosis, and those who care for them.

The survey is collaborately set up by 3 patient organizations: ‘Got Arginine VasoPressin Deficieny | Got Central Diabetes Insipidus?’ Facebook group, WAPO and a survey section by the Histiocytosis association. Dr Cihan Atila, Neuroendocrinology University of Basel, Switzerland, supported us through the process.
We look forward to sharing the results in December and early 2025.

The study is active from May 27 till August 23, 2024!
Participate now and be an agent of change!

The survey is available in English, Spanish and Portuguese:  https://feedback.surveylab.com/92c/3421908d/AVP-D/CDI/
Due to the length of the survey, you can open and reopen it later on at the same computer.

You can help by taking the survey or reshare with other people who are challenged by these disorders.
If you have any questions, write to us at: mail@wapo.org, and we will be happy to help you.

Thank you for taking the survey!

‘Got AVP-D | Got CDI?’ facebook group – Histiocytosis association – WAPO

 

This survey was made possible with in-kind support e.g. reviewing through patient organizations, health care professionals and patients. The SurveyLab AI-translations were checked for English, Spanish and Portuguese. Financial support by WAPO.
We thank all parties involved for their support.