WAPO Global Summit

The Annual WAPO Global Summit is an event, where WAPO member organizations are invited to meet with interesting speakers, who are presenting on the latest medical information and insights, some even with exercises. In this way the WAPO community will receive updates and education on important and pituitary disease related topics. Patient advocates can ask their questions and update their knowledge, in order to support their patient community.
In the ‘Best Practice’ session, patient advocates present on projects they have run in the past year, to give ideas to the other patient representatives to improve their support to their local community.
Included in the Global Summit is the Annual General Meeting.

Please find all Global Summit programs below, since the start in 2016.

The available recorded presentations are available in the Library of this website.

Please find above the topics which will be covered in the Summit program.
The 8th WAPO Global Summit 2025 will be held on October 10-11-12, 2025 in Ireland.
Patient organizations with receive an invitation per email.

The 7th WAPO Global Summit was held in Leixlip, Ireland on October 4-5-6, 2024.
It also included the live Annual General Meeting for member organizations.
Topics discussed (see recordings in wapo.org/Library/summit in English and Spanish):

* Travelling with a Hidden Disability
* How to improve the diagnosis journey
* Genetics
* Harmony & Wellness support for pituitary & adrenal patients
* Process of a survey study
* Arginine VasoPressin Deficiency | Central Diabetes Insipidus study and outcomes
* Comorbidities in Endocrine Disorders
* Availability of psychological therapies for patients affected by pituitary pathology
* Acromegaly study in the USA
* New formulations in treatment of Acromegaly patients and the patient compliance
* A session where active music could support well-being
* Adrenal Insufficiency and glucocorticoid withdrawal syndrome: ‘Are they the same?
How should we manage them?’
* Power of Collaboration
* Start up patient organization experiences
* Engagement and Fundraising approaches
* Round table discussions on various topics

The WAPO Global Summit 2023 was held from 6-8 October in Buenos Aires, Argentina.

We have offered Nurses of Central and South America, who were collaborating with patient organizations and with an interest in pituitary-endocrine disorders, to join the Summit program.
On Sunday morning October 8th, we invited Associate Professor Chris Yedinak (OHSU, US) to give a half day training for the Nurses, which was well received.

Presentations were given in English and Spanish, while interpreted by 2 interpreters, and most of them will be shared afterwards in the WAPO Library.

WAPO Global Summit 2022
Date: June 3-4-5, 2022
Location: Amsterdam, Netherlands

 Speaker Program: 

Friday, June 3:
– ‘Best Practices’ by Patient Advocates
– Bone Density’ by Natasha Appelman-Dijkstra (internist-endocrinologist specialized in osteoporosis, metabolic bone diseases and calcium/phosphate disturbances,     LUMC, Leiden, The Netherlands);
– ‘European Society of Endocrinology – shaping the future of endocrinology – a joint effort’ by Dirk De Rijdt (ESE Director of Strategic Partnerships, Belgium)

Saturday, June 4
– ‘Importance and Outcomes of WAPO Mapping Project 2021’ by Sandra Mesri (APEHI, WAPO, Buenos Aires, Argentina);

  • ‘Newest Insights Research Acromegaly and Cushings’ by Elena Valassi (Associate Professor of Endocrinology, Hospital Universitari General de Catalunya and Hospital Sant Pau, Spain);
  • ‘Acromegaly Perspectives’ by Pamela Funes (International Society of Endocrinology, Netherlands) with Chris Yedinak and Sheila Khawaja;
  • ‘Fatigue Management’ by Samantha Harbut (Specialized in Pain and Fatigue Management, NHS Dorset Healthcare Trust, England);
  • ‘Patient/Person centered care in pituitary disorders’ by Nienke Biermasz (internist-endocrinologist, Leiden UMC, the Netherlands;
  • ‘Preview and Discussion Animated Disease Video’s’ by Chris Yedinak (OHSU, USA);
  • ‘Brain Fog and other cognitive challenges in pituitary tumors’ by Garni Barkhoudarian (Pacific Neuroscience Institute, California, USA)  – virtual

WAPO eSummit 2021
Dates: March 19 and 20, 2021 AND October 8-9 2021
Online sessions

Speakers Program: 

March 19:

  • ‘Obesity, Nutrition and recent updates’ by Prof. Elisabeth van Rossum, Erasmus MC,
    The Netherlands;
  • ‘European Reference Networks + ENDO/ERN’ by Ir. Johan Beun, AdrenalNET, The Netherlands

March 20:

  • ‘Biosimilars’ by Dr. A.A.M. Franken, Isala Clinic, The Netherlands;
  • ‘Gonadal, Fertility and Libido in pituitary disorders’ by Javier Salvador Rodriguez, Universidad de Navarra, Pamplona, Spain;
  • ‘Pituitary Adenomas during Pregnancy’ by Anton Luger, Wiener AKH, Austria

October 8:

  • Management of acromegaly patients in the COVID era: impact on disease control and the role of telehealth by Dr Federico Gatto, Associate Medical Director, Endocrinology Unit of the IRCCS Ospedale Policlinico San Martino, Genoa, Italy;
  • Endoscopic approach to pituitary tumour resection by Dr Michael Cusimano, Professor of Surgery, University of Toronto, Canada;
  • Pituitaries: Picture Perfect or Pathological? By Dr David Pettersson, Associate Professor of Diagnostic Radiology and Medical Director of Magnetic Resonance Imaging, Oregon Health & Science University, USA;

October 9: 

  • Persistence of muscle weakness in patients with controlled acromegaly and Cushing’s syndrome in remission. Mechanisms and role of physical activity by Dr Elena Valassi, Associate Professor of Endocrinology, Hospital Universitari General de Catalunya and Hospital Sant Pau, Spain;
  • Building capacity for multi-stakeholder collaboration by Chi Pakarinen, Patient Engagement and Involvement Expert, Belgium;
  • Adrenal Insufficiency, COVID-19 and Beyond by Dr Chris Yedinak, Associate Professor and Doctor of Nursing Practice, Northwest Pituitary Center, Oregon Health & Sciences University, USA.

WAPO eSummit 2020
Date: October 3, 2020

Speaker Program:

– Dealing with psychological issues in the COVID era by Alicia Santos and Eugenia Resmini (San Pau, Spain);

  • Patients and HCPs: An Example of Collaboration by Pamela Funes (International Society of Endocrinology, Netherlands);
  • Minor complications of pituitary surgery by Garni Barkhoudarian (Neuro-Pacific Institute, USA)
  • The visual impact of pituitary disorders by Lucas Viana (FLENI hospital, Argentina);
  • Can adults with Pituitary Disorders take Growth Hormone? by Debora Katz (FLENI hospital, Argentina)
  • Round table session by Chi Pakarinen (PFMD/The Synergist, Belgium).

WAPO Global Summit 2019 Program
Date: May 17-19, 2019
Location: Novotel Lyon + ECE2022 Nurses Day

Speakers Program:

– Best practices by patient advocates (6 presentations)
– “How to effectively communicate with patients in difficult situations” by Karen Powell – French Cancer Cancer Patient Support representative

– Strategic planning for patient organizations by Kathy Redmond (Redmond Consulting)
– A journey through clinical research, working together to improve the experience, by Rachel Jones (Swi..ch, UK)

Departure by bus from WAPO to ECE2019 venue a Joint session with ESE Nurses
Session 1: Presentations followed by a Q&A session :
– WAPO Mapping Project by Sandra Mesri, WAPO (Argentina)
– Residual Morbidity and impact on Quality of life in pituitary disease by Elena Valassi, Consultant Endocrinologist (Barcelona, Spain)
– Shared decisions and making the best of your patient consultations by Cecilia Follin, Endocrine Nurse Practitioner (Lund, Sweden);
– From question to evidence: developing a research or audit question and conducting projects to
evaluate your practice or organization by Anne Marland, Nurse Practitioner & PhD Researcher (Oxford, UK)

Session 2: Developing a consensus for patient education and standards care services for patients
with Adrenal Insufficiency:

– Therapeutic Education of Patients with Adrenal and Pituitary Disorders: the French initiative by Alexandrine Bost and Brac De La Perrier (Lyon, France);
– Adrenal insufficiency in patients with pituitary and adrenal conditions and evidence of impact of patient education by Christine Yedinak, Professor of Endocrinology Nursing (Oregon, USA);
– Patient perspective: primary adrenal insufficiency by Johan Beun, AdrenalNet (the Netherlands);
– Patient perspective: secondary adrenal insufficiency in pituitary conditions by Muriël Marks – WAPO (the Netherlands);

– Developing a consensus for patient education and standards for care services for patients with adrenal insufficiency: an international collaboration by Sofia Llahana, Consultant Nurse in Endocrinology, ESE Nurses (London, UK)

16:45    End combined session & Departure WAPO by bus

WAPO Global Summit 2018
Date: 20-22 April, 2018
Location: Venice, Italy

Theme:  ‘Living a positive and healthy life’

Speakers Program:

– Brief Twitter and Social Media Wall introduction by Mesa-Lab, Italy
– Sharing of Best Practices by Patient Advocates

  • Optimizing pituitary hormone replacement incl. Q&A by Prof. Richard Ross (UK)
  • Pituitary Centres of Reference incl Q&A by Dr. Felipe Casanueva (Spain)
  • Importance of the multidisciplinary team (pituitary unit) incl. Q&A by Dr. Diego Ferone (Italy)
  • Advocating for access to centers of excellence in Pituitary care (dialogue between all speakers and patient advocates)
  • Introduction to Mindfulness by Dr. Michelle Zandvoort (UK)
  • ‘World Café’ session: Developing a plan of action on:-
    – raising awareness about pituitary conditions;
    – advocating to access to Pituitary Reference Centres;
    – promoting QoL for people living with pituitary conditions;
    – advocating for access to innovative therapy;
    – improving sustainability of pituitary organizations
  • WAPO General Meeting incl. Poster Election

WAPO Global Summit 2017
Date: 12 – 14 May, 2017
Location: Amsterdam, The Netherlands


Speakers Program:

– Advocacy Session: Collaboration with healthcare professionals:
learning from the experiences of pituitary and adrenal patient groups
1. AdrenalNET experience and international collaboration by Johan G. Beun, Coordinator AdrenalNET – The Netherlands;
2. International Endocrine Nurses Association, a new established organization
by Chris Yedinak, Ass. Prof. Oregon Health & Sciences University Northwest Pituitary Centre – Portland, USA
3. Panel discussion: How to leverage the collaboration of the Pituitary community with HCPs? with Chris Yedinak, Johan G Beun, Onno Meijer

– Medical session: Scientific update on pituitary conditions
1. Research in Acromegaly by Dr. Min He – Huashan hospital – Shanghai – Republic of China;
2. Research in Cushing’s Disease: Unknowns about hydrocortisone need: where we would like to be in 20 years? By Onno Meijer – Research at Leiden UMC – The Netherlands;
3. Perspective on nurses’ role in research and side effect management by Chris Yedinak

Introduction: How to cope with Social Media in order to support your PO?
Focus on: Facebook, Twitter, YouTube, LinkedIn, SlideShare, AuthorSTREAM by Alfonso Aguarón, Spain

                                    

Two parallel rotating sessions on hands-on social media use:
1. Facebook outreach – live demo of creating pages and groups, use of analytics – Alfonso
Aguarón;
2. How to create a webinar (live demo based on a WAPO webinar) by Jan Geissler


Best practice in pituitary patient advocacy: Several presentations by Patient Advocates

WAPO Global Summit 2016 – First Summit
Date: 15-17 April, 2016
Location: Amsterdam, the Netherlands

Speakers Program – April 15 and 16, 2016:

– Facilitating research on pituitary conditions: the role of patient organisations
by Šarūnas Narbutas, President of Lithuanian Cancer Patient Coalition, CML Patient Advocate, Lithuania;

– Scientific update on pituitary conditions

  • What’s new in acromegaly?
  • Diego Ferone, Assistant Professor at the Department of Endocrinological & Medical Sciences, University of Genoa, Italy;
  • What’s new in Cushing’s Disease?
    Prof. Annamaria Colao, Professor of Endocrinology, University of Naples Federico II, Italy
  • Improving the lives and prospects of people living with pituitary conditions;
    Panel discussion on access to specialist treatment and care:
    Panel:
    – Prof. Vladislav Cherebillo, Head of Endocrine Surgery Research Department, Federal Almazov  North-West Medical Research Centre, St. Petersburg, Russia;
    – Diego Ferone, Assistant Professor at the Department of Endocrinological & Medical Sciences, University of Genoa, Italy;
    – Judith van Eck, Endocrine Nurse Specialist, Erasmus Medical Centre, The Netherlands.
  • Quality of Life after treatment for Cushing’s Disease: towards identification to modify factors to improve general wellbeing by Prof. Alberto Pereira Arias, Professor of Endocrinology, Leiden University Medical Centre, The Netherlands
  • Advancing pituitary patient advocacy globally – various patient advocates sharing experiences.


April 17, 2016: 

  • WAPO Inaugural meeting – Formal acceptation of WAPO Governance and Legal Entity incl. Election Board Members