The World Alliance of Pituitary Organizations (‘WAPO’) is a self-governed non-profit organization created in order to unite the international pituitary patient community to push for optimal treatment and care for all patients with pituitary and related conditions worldwide.
The goal of our organization is to share information, work together and support all pituitary patients’ advocates all around the world.
WAPO has a great potential value for pituitary patient advocates, as it serves as:
A united global patient voice in international and national policy-making;
A forum to gather and disseminate evidence-based information on pituitary and related diseases;
A source of best-practices shared by pituitary advocacy organizations and operations;
The spearhead in the drive to increase global pituitary awareness activities.
An annual Global Pituitary Advocacy Meeting in Zurich was organized for patient advocates from 2012 – 2014 by Novartis. Patient advocates from 25-30 countries joined and delegates discussed the most critical issues they were facing as national communities. The delegates met outstanding endocrinologists, nurses, and other professionals, and learned about the various diseases and most recent scientific findings in the area. The outcome of the very first meeting, was the ‘Declaration of Zurich’, prepared and signed by the delegates, including 10 aspects of patient life, which should be implemented in medical care!
In October 2014 at the 3rd Global Pituitary Advocacy Meeting, the delegates decided to create an independent, global organization named the ‘World Alliance of Pituitary Organizations’. The Steering Committee held it’s first meeting on October 19, 2014.
The first official meeting and event was the WAPO Summit, in April 2016. The event was fully organized by the Steering committee, and we found three sponsors for it. It became the first formal meeting for WAPO incorporation.
At the AGM, included in the Summit, the first Board of Directors was elected and, on May 30th 2016, the World Alliance of Pituitary Organizations was registered as an association in the Dutch Chamber of Commerce.
Today, WAPO is a well-established non-profit umbrella organization that represents many patient organizations. We are still looking for more patient organizations to collaborate with.
Since WAPO was established, many activities and products were presented:
– a general facebook page as well as a page for WAPO members only, the Facebook Forum Group;
– Social Media accounts, like Twitter and LinkedIn;
– an International Travel Letter, in many languages, including supporting information to prepare travelling;
– By laws;
– the Declaration of Zurich, original version in 2012, and reviewed in 2017;
– the WAPO Code of Conduct, to be signed by all representing patient advocates;
– a blog, which since 2020 is replacing the quarterly newsletter;
– organization of an annual WAPO Summit incl. AGM, since 2016.
During the Covid-19 pandemics, virtual eSummits were organized in 2020 and 2021;
– organization of a webinar, which will find a follow-up in 2022, with a series of informative webinars;
– organization of an online serie of meetings in the ‘Global Café’, to meet and share experiences during
the Covid-19 pandemic incl. sessions in English, Spanish and Russian.
– Mapping Project I (2018/2019) and Mapping Project II (2021) to engage our members and to
understand what is important in different countries – like medicine availability;
– Task Force, since September 2020, WAPO supports member organizations on request;
– Medical Advisory Board, now with 6 health care professionals, in future more HCPs to be invited.
– Webinar 2022 Series, 8 webinars during 2022 on important topics for the pituitary community, and create an informative library – in open access and in English + Spanish – on the WAPO website.
We are currently in the process of collecting and preparing resources for future activities to support our members and to make WAPO a valuable partner for healthcare professionals and sponsor projects.
Want to read more? Following the earlier Summit reports (2016 – 2019), WAPO continued from 2018 with a serie of Activity Reports, which you will find on this page.
WAPO 2018 Activity Report – FINAL
WAPO Activity Report 2019 – FINAL
WAPO 2020 Activity Report – Final2 + 2020 WAPO Financial overview
WAPO 2021 Activity Report – Final