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The World Alliance of Pituitary Organizations (WAPO)

Patient Advocacy Organization
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  • Info
  • People 3
  • Initiatives 8
  • Events 0
  • Resource 1

About the organization

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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.

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Website

http://wapo.org

Address

Bulkstraat 18 4196AW Tricht, Netherlands

Organization main contact email

mail@wapo.org

Phone number

+31 6 53865700

Conditions

Pulmonary/Respiratory Diseases/Other

People

Muriël Marks

Member of the Board of Directors/Executive Director

Netherlands

The World Alliance of Pituitary Organizations (WAPO)

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Andrei Andrusov

Chairman of the Board

The World Alliance of Pituitary Organizations (WAPO)

Sheila Khawaja

✔️ Translator, IT to EN | Business English Language Trainer | | Rare Disease Patient Advocate | EURORDIS Fellow

San Canzian dIsonzo, Italy

The World Alliance of Pituitary Organizations (WAPO)

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Initiatives

  PFMD - Patient Focused Medicines Development

The Synergist, PFMD, National Health Council ,
+ 21

Global

  Pledge to Patients

PFMD, The Synergist, National Health Council ,
+ 15

Global

Currently underway

  SYNaPsE Patient Engagement Global Landscape, Expert Network and Repository

PFMD, Merck Sharp & Dohme (MSD), EURORDIS - Rare Diseases Europe ,
+ 23

Global

  Co-creation of the Patient Engagement "Meta-Framework"

PFMD, NIHR INVOLVE, Drug Information Association (DIA) ,
+ 22

Global

Completed over one year ago

  The Patient Engagement Quality Guidance (PEQG)

PFMD, The Synergist, National Health Council ,
+ 9

Global

Currently underway

  Patient engagement in the selection and development of clinical outcome assessments (COA)

Evidera, Boehringer Ingelheim, PFMD ,
+ 12

Global

Completed less than one year ago

  Patient engagement in co-creation of Patient Information Leaflets and other patient facing material.

PFMD, Takeda Pharmaceuticals, UCB, Canadian Arthritis Patient Alliance ,
WI
+ 20

Global

Completed less than one year ago

  Patient Engagement How-To Guide for the creation of Plain Language Summaries for scientific publications

Future Science Group, SAGE Publishing, Boehringer Ingelheim ,
LR
+ 20

Global

Completed less than one year ago

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