About the organization
Basic details : WAPO believes that the strength of a global network of national pituitary patient organizations will lead to improved diagnosis, treatment and care for pituitary and adrenal patients worldwide.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.
Mission : WAPO believes that the strength of a global network of national pituitary patient organizations will lead to improved diagnosis, treatment and care for pituitary and adrenal patients worldwide.
Vision : 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.
Badges earned
Website
Address
Bulkstraat 18, 4196AW - Tricht, NL
Organization main contact email
mail@wapo.org
Phone number
+31 6 53865700
Conditions
People
Muriël Marks
Member of the Board of Directors/Executive Director
Netherlands
Sheila Khawaja
✔️ Translator, IT to EN | Business English Language Trainer | | Rare Disease Patient Advocate | EURORDIS Fellow
San Canzian dIsonzo, Italy
Initiatives
SYNaPsE Patient Engagement Global Landscape, Expert Network and Repository
Co-creation of the Patient Engagement "Meta-Framework"
Patient engagement in the selection and development of clinical outcome assessments (COA)
Patient engagement in co-creation of Patient Information Leaflets and other patient facing material.
Patient Engagement How-To Module for the creation of Plain Language Summaries for scientific publications
Resources
Working Group Updates 2020
11 Mar 2020 Framework/guidance