World Alliance of Pituitary Organizations: The Origin Story

Written by Muriël Marks, Executive Director, World Alliance of Pituitary Organizations

History

Between 2012-2014, Novartis started to send out personal invitations to acromegaly and Cushing’s patient advocates to represent their community in meetings which were organized in Zurich. The idea behind this was to give acromegaly and Cushing’s patient advocates a platform where they could meet. Medical speakers were also invited to present updates on research and treatment to the patient advocates. We also discussed treatment and issues patient advocates and patients faced during their journey and shared our experiences. In 2012 the ‘Zurich Declaration’ was discussed and finalized in 2013, whereby patient organizations asked for the same treatment worldwide. (See attached). The ‘Declaration’ is reviewed every 3 years.

The objective was to learn from each other, in an open setting for patient advocates.
In the organization of 2013-2014 meetings, the patient advocates were invited to became more involved in the organization of the event, including the topics to be discussed and speakers to be invited. When Novartis informed us in 2014 that there should be more sponsors or the events would stop, we discussed this within the patient advocacy community. Our final conclusion was that we should establish an independent, formal association for pituitary patient groups, and to start organizing our own meetings.

On Our Own

From 2014-2015 we worked hard within a small steering committee to make everything possible. Issues we met were ‘how to raise funds’, write our by-laws, where to establish the organization, and more. It was hard to find information and support on all topics. The Dutch Adrenal Patient Society – Bijniervereniging NVACP – was willing to support one of the steering committee members (also a board member of the Dutch group) with financial help to go to a notary and guarantee the legal status and to open a bank account.

From there, ‘WAPO’ started raising funds for the first ‘WAPO Summit’ in Amsterdam, the Netherlands, where acromegaly and Cushing patient advocates could meet and discuss and share experiences with each other. It was also an opportunity for interesting speakers to share information which was not available to all of the patient advocates. Patient advocates of several regions were impressed by how we collaborated with physicians and nurses in an open discussion. After returning home, they invited all endocrinologists in their country, and started discussions as well. The way of collaboration changed in this country!

2022 

At this moment, WAPO represents 42 patient organizations, some focusing on all pituitary disorders, others a combination of adrenal or rare diseases. The WAPO Board consists of 5 persons, all patients from 5 countries, e.g., Argentina, Greece, Italy, Netherlands, USA. We hope to represent all world continents in the future once again.

The Covid-19 global pandemic that began in 2020 put a halt to our in-person meetings and forced us to seek new methods and channels to inform and keep in touch with our global community. The 2020 WAPO Summit was reorganized and became our first virtual event ‘eSummit 2020’, in ‘open access’ format to enable anyone related to pituitary disorders, e.g., patients, patient advocates, caregivers, health care professionals, nurses and pharmaceutical industry to attend our informative sessions. We repeated this in 2021 with two additional eSummits. Another new activity was the online ‘Global Café’ sessions, which started when we had to cancel our live Summit in Argentina in 2020, and where we could learn how the patient groups managed their treatment and access to it (or lack of it) during the pandemic.

This year we finally organized our 5th Global Live Summit again, in the Netherlands. The number of participants wasn’t as high as we had wished, mainly due to persistent travel restrictions related to Covid-19. It was nonetheless fantastic to see our members again and meet new ones to welcome them to the event and the community. It was a great success and many action points for the upcoming years were discussed.

We Have More to Do

One of the outcomes of the Summit discussions was the interest to organize a global survey with the WAPO community on the impact of comorbidities. Most pituitary patients also have to deal with other disorders, like thyroid issues, obesity, diabetes type II, osteoporosis, and more. We look forward to the outcomes of the survey, which will be of great interest to all parties involved.

We have also organized a series of 7 educational webinars in 2022, which we also intend to organize for 2023. These webinars are scheduled once a month, with an interesting medical topic or informative subject for the global pituitary community, such as the March webinar on Plain Language Summaries, a topic which is quite new and of great value to researchers, pharmaceutical companies and patient advocacies.

Check out the program for the rest of 2022 and sign up here: https://web.cvent.com/event/bfde0104-3af6-43f2-b7df-7b546fa4abfc/summary

Future webinars will be open to all who wish to learn more, share knowledge, and educate themselves, their community and friends.

When you are interested, after reading the above, to collaborate with WAPO as a volunteer, fundraiser, researcher or social media content supporter, we really would like to get in contact with you. Also, if you have questions, please send an email to [email protected]

Make sure to also check out our website (new website is being created).

 

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