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 and sponsored by Novartis from 2012 through 2014. It gathered patient advocates from 25-30 countries. The delegates discussed the most critical issues they were facing as national communities and shared best practices. The delegates met outstanding endocrinologists, nurses, and other professionals, and learned about the various diseases and most recent scientific findings in the area.
At the very first Global Pituitary Advocacy Meeting in Zurich, the delegates prepared and signed the Declaration with a list of 10 aspects of patient life and medical care which should be implemented globally.
In October 2014 at the 3rd Global Pituitary Advocacy Meeting, the delegates decided to create a global organization named WAPO, The World Alliance of Pituitary Organizations. The first meeting of WAPO Steering Committee took place on October 19, 2014.
In April 2016, the first WAPO Summit took place. It was fully organized by the Steering committee and sponsored by Novartis, Chiasma and StrongbridgeBio. It became the first formal meeting for WAPO incorporation. You can get more information on the Summit and its results in the report.
At 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.
At the Summit, the first Board of Directors was elected and, on May 30, 2016, the World Alliance of Pituitary Organizations was registered as an association in the Dutch Chamber of Commerce.
WAPO Today 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, we organized the following:
A General Facebook page as well as a closed – for WAPO Members only – Facebook Forum Group, where members can raise questions or share their events and activities;
Social Media accounts, like Twitter and LinkedIn;
An International Travel Letter in many languages, including supporting information to prepare travelling;
Declaration of Zurich, originated in 2012 and reviewed every 5 years;
WAPO’s Code of Conduct;
A quarterly Newsletter, which in 2020 will be replaced in a ‘blog’ mailing;
Organization of an annual WAPO Summit, and in 2020, an eSummit;
Organization of a webinar, which will find follow-up in 2021;
Organization of an online series ‘Global Café’ when the Covid-19 pandemic started incl. sessions in English, Spanish and Russian. Members could raise questions, share organization’s activities, info on treatment and access to medication as well as share their personal thoughts and experiences.
Since 2018/2019 WAPO has been active in an international mapping project engaging our members to understand what goes on in different countries – such as medicine availability. In 2020/2021 WAPO will start a new project to update information and interview new member organizations.
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 authorities and sponsors alike.