Extended date – WAPO Global Acromegaly Patient Survey in various languages

Good news! We have extended the survey till November 16th!

We are pleased to let you know that the WAPO Acromegaly Research Patient Survey is now available in Spanish and German, as well as English.
The survey aims to understand the wider experience of living with acromegaly, including what matters to patients beyond the clinical measurements that are often the main focus of care.

We want to hear from as many people living with acromegaly or their caregiver or family member to complete the survey with them, across different countries and communities.

Please help us by sharing the survey widely through your networks, social media and patient communities, particularly during Acromegaly Day (November 1) and Pituitary Month (October).

To help you share the survey, please use the below links or flyers with QR code:

Links:

English: https://live.e-survey.io/switch/share/601d653853

Spanish: https://live.e-survey.io/switch/share/18883173af

German: https://live.e-survey.io/switch/share/0a09787888

Flyers including QR code:
WAPO 2026 Global Acromegaly Patient Survey 2026 – English – extended date
WAPO 2026 Global Acromegaly Patient Survey 2026 – German – extended date
WAPO 2026 Global Acromegaly Patient Survey 2026 – Spanish – extended date

Important:
Please always use and share the survey links provided with this message.
Do not copy the address from your internet browser, as this may direct people to the wrong survey or location.Following the patient survey, we plan to develop a questionnaire for healthcare professionals and compare the findings. We aim to develop recommendations for publication and share the findings at the 10th WAPO Global Summit in 2027.
Every patient voice matters!
Please help us reach as many people living with acromegaly as possible.

Thank you for your support.

This project was made possible with financial support from Camurus and WAPO. 

My Acromegaly Reflection Sheet

Exciting news!

WAPO has teamed up to create an incredible new resource for those living with Acromegaly. Introducing the ‘Patient Reflection Sheet’—a fantastic tool designed to help patients gain valuable insights into their daily lives, symptoms and emotional well-being over time. This handy sheet is perfect for bringing along to appointments with your physician, endocrinologist, or neurosurgeon, serving as a thoughtful discussion starter.

Currently, it’s available in English, but stay tuned! We’re looking forward to expanding this resource into Spanish and German to better support patients everywhere. Together, we can empower individuals on their journey with Acromegaly!

WAPO Patient Reflection Sheet  (October 2026)

The development of this material has been supported financially by Camurus.

WAPO Acromegaly Patient Survey

The WAPO Acromegaly Patient Research survey is open.

Through this survey, initiated by WAPO member organizations, we aim to gather deeper insights regarding the needs and difficulties faced by people living with Acromegaly, such as effects on daily activities, the support available to you, and what you feel is lacking. It is a project and survey ‘beyond biochemistry’.

This global survey is intended for people living with acromegaly or for caregivers completing the survey on behalf of their family member.
If you would like to receive an interview invitation later, please provide your email address after finishing.The input obtained will provide insights that we will evaluate against the input from health care professionals, which is the upcoming survey project.
All results will be released and/or showcased at the upcoming WAPO 10th Global Summit 2027, with recordings to be available in the WAPO Library.Currently, the survey is available only in English, but we have secured funding for translations in in Spanish and German as well, which we hope to launch around Acromegaly Day, November 1st.

Please distribute the survey link or QR code within your networks and assist in connecting with the acromegaly communities.
Each reply contributes to a deeper comprehension of living with acromegaly.

Please use this link or QR code:
English : https://live.e-survey.io/questionnaires/6a82e46e5e75b/4f6f187354

 

 

Celebrating 10 years of WAPO

This year marks a very special milestone for WAPO: 10 years since our organization was officially registered as a non-profit in 2016!

What began as a small group of dedicated patient advocates has grown over the past decade into a respected and prominent umbrella organization representing 42 patient organizations from around the world, all working to support people affected by pituitary and adrenal conditions.

To celebrate this important milestone we are pleased to release the official WAPO 10th Anniversary video, which is now available on our website and on our YouTube channel.

We collected video messages from a selection of current and former members of the WAPO Board and Steering Committee, as well as patient advocates from across the world. Through these personal testimonials and photographs, we take a look back at WAPO’s beginnings and reflect on the many achievements and friendships made over the past 10 years. We also look ahead, sharing our hopes and dreams for the future.

The video is a little like a WAPO photo album brought to life and it captures not only where we have come from, but equally the people and spirit behind our organization. The strength of WAPO comes from its people. We may be from different countries and backgrounds and have diverse lived experiences, but we are united by a shared commitment to the pituitary and adrenal community.

We hope that you will enjoy the video and thank everyone who took part in making it so special.

We would also like to take this opportunity to thank all of WAPO’s members, patient advocates, Medical Advisory Board members, healthcare professionals, industry sponsors, and professional service providers (audiovisual services, interpretation, graphic design, medical writing, and communication). Whether you have been with us from the start, or joined us along the way, your support and collaboration has made the past 10 years of WAPO possible, worthwhile and truly meaningful.

We look forward to what we can achieve together in the next 10 years and will continue to strive to make a difference in the lives of people living with pituitary and adrenal conditions.

 

WAPO and Homeostasis VC: putting patients in the room

Most of us have had a version of the same experience. A treatment that works well in one country is unavailable in another. A diagnosis that took years, and a hormone replacement regime that approximates the body’s rhythm without ever quite matching it.

These are not gaps in the science. These are market gaps. Great science exists, but far too often, the mechanisms to translate that technology into widely available products and therapies are lacking.

That is why WAPO is announcing our mutual endorsement with Homeostasis VC, a patient-led venture fund investing in hormone health. Its first fund is dedicated entirely to adrenal and pituitary disease.

Why this fits our alliance

The pituitary and adrenal axis is one system, and progress rarely stays inside a single diagnosis. Earlier detection, more reliable hormone profiling, better ways to replicate natural rhythms: these travel across indications and across communities.

What WAPO adds is reach, and something harder to buy: a perspective on how differently these conditions are lived. Across our member organisations we see the variation in access to medication, in emergency protocols, in what a patient can reasonably expect from their health system. Innovation designed around one healthcare system does not arrive at the patient in most of the world.

WAPO will bring member-driven patient input to sharpen new technologies. Homeostasis VC will bring early sight of what is coming through the pipeline. In practice, the questions we send round will reach people in a position to actually engage with the answers.

Muriël, member of the board WAPO:

“Through WAPO, patient voices from countries like India and Panama become part of a powerful global conversation. This collaboration brings greater visibility to pituitary and adrenal disorders while helping communities learn, advocate and grow together.”

Adriaan, founder of Homeostasis VC:

“Most innovation in this space dies between the lab and the clinic. Not because the science fails, but because nobody funds the unglamorous middle. That gap is where we work. I started Homeostasis VC as a parent, not as an investor. What I learned quickly is that the people who understand these conditions best are rarely in the room when decisions get made about them. Partnering with WAPO puts them there.”

9th WAPO Global Summit 2026


We are delighted to let you know that the 9th WAPO Global Summit will be held in the beautiful city of Madrid, Spain!
We’re currently working on the program.
We’ll be inviting patient organizations with a WAPO membership and our Affiliate Members per email.

Worldwide Acromegaly Study


Do you want to help Acromegaly patients get diagnosed sooner?

We know that earlier diagnosis usually improves outcomes and quality of life. Please take part in our international research study that uses computer technology to try to diagnose patients sooner by detecting the earliest features of Acromegaly.

We are looking for individuals who currently have or previously had Acromegaly (including gigantism) or other types of pituitary adenomas/tumours to participate.

Your participation in this study is critical to help develop the most accurate tools for diagnosis and greatly improve the quality of life of future patients. In this study, you will be asked to upload your photographs and complete a questionnaire, for use in a machine learning analysis. You can access the study using the link provided below.

If you have questions about taking part in this study, you can send an email to the research team at acromegaly-research@smh.ca or telephone at 001-416-864-5312.

Thank you for considering participation in this project.

For more information on the study or to participate, please click on the URL link below or enter it in your browser or scan the QR code:

https://lnkd.in/gUsBYFFK

A new name for WAPO: Worldwide Adrenal and Pituitary Organizations

We are pleased to announce that we have changed our name from World Alliance of Pituitary Organizations to Worldwide Adrenal and Pituitary Organizations (WAPO)!

After months of reflection and conversations, starting at WAPO’s Annual General Meeting (AGM) in October 2024, patient advocates were invited to vote and share their ideas on a possible name change. After their input, we settled on four options during the live AGM on October 12th of this year, and patient advocates were invited to select their preferred choice. The options were the following:

  1. World alliance Adrenal and Pituitary Organizations (WaAPO)
  2. Worldwide Adrenal and Pituitary Organizations (WAPO)
  3. World Alliance of Pituitary & Adrenal Organizations (WAPAO)
  4. World Alliance of Adrenal and Pituitary Organizations (WAAPO)

The winner was the Worldwide Adrenal and Pituitary Organizations (WAPO), with a majority of the votes.

This change represents a natural and logical evolution for our organization. Although we have had WAPO members from the adrenal community since the start, in 2016, this was not explicitly represented in our name until now.

We feel that our new name now matches the true identity of WAPO and better reflects our commitment to representing both pituitary and adrenal patient communities within our global network.

While the name and logo have changed, the acronym, WAPO, remains the same. This will ensure continuity and recognition with our partners, stakeholders, and the broader community.

Our goals and missions as a non-profit umbrella organization and alliance representing the patient organizations of the international adrenal and pituitary community remain unchanged. We continue to elevate our patient advocacy activities and provide essential value to pituitary and adrenal communities worldwide.

The new name and logo have already been updated on the WAPO website. They will gradually be replaced on all of our social media channels and other resources/materials over the coming months so that we will be ready for a new year of WAPO in January 2026.

We look forward to continuing to work with our patient advocates, Medical Advisory Board healthcare professionals, partners, and sponsors in 2026. We have many exciting activities planned and we are committed, more than ever, to our goal of improving the diagnosis, treatment, and care of pituitary and adrenal patients worldwide.

To learn more about the adrenal and pituitary conditions that we cover, visit our pituitary and adrenal disorders information page.

Prolactinoma Study ‘Promise’

The Research team of University Hospital of Basel, Switzerland, have developed several surveys, together with WAPO and other patient advocacy groups and medical professionals, including this latest ‘Promise‘ survey regarding patients | people with experience of living with Prolactinoma.
At this moment already 250 people have completed the survey, however a higher number of responses would give us more insights.

We would appreciate if you could please share the survey with people diagnosed and living with Prolactinoma, and we would appreciate your participation in this survey.
The study is available in English, German, Italian and Spanish.

Survey link: https://redcap.dkfbasel.ch/surveys/?s=LFL9TMW8WWPTKRD8 
English: Prolactine Survey – Invitation _Survey_English
German: Prolactine Survey – Einladung_Survey_Deutsch

 

Survey Cushing’s Disease

Would you like to contribute to research about Cushing’s disease journey and its unmet needs?
If you are living with Cushing’s disease, a care partner for people with Cushing’s disease, or a patient representative, then this is an opportunity for you to share YOUR thoughts in a research survey questionnaire. The purpose of this survey is to better understand the experience of people living with Cushing’s Disease.
To see the infographic, click: CD comparative research – infographic

The survey is available in different languages. Click the link to open the survey:
• French: https://www.surveymonkey.com/r/CushingFrench
• Germany: https://www.surveymonkey.com/r/CushingGerman
• Italian: https://www.surveymonkey.com/r/CushingItalian

You can also help by sharing the survey with your network. Currently, we are only collecting answers from the following countries: France, Germany, and Italy.

This survey was commissioned by Lundbeck and developed in collaboration with WAPO and powered by Red Thred Solutions.