This year I had the privilege of attending the third annual Global Pituitary Patient Advocacy Meeting in Zurich, Switzerland, representing the Cushing’s Support and Research Foundation from the United States.
The purpose of this meeting was to formally create an international organization of groups who advocate for those affected by pituitary disease. Speakers included Rob Camp from Spain, representing EUPATI, the European Patients’ Academy, Teodora Kolarova of Bulgaria, representing INCA, the International Neuroendocrine Cancer Alliance, Durhane Wong-Reiger, of Canada, representing CORD, the Canadian Organization for Rare Disorders, and Sandra Mesri of Argentina, representing APEHI and Alianza Hipofisis Latinoamericana. They all described successful international campaigns on behalf of those affected by rare diseases. The message was: It can be done!
Global meetings are a fascinating way to see how people in different societies respond to the issues of pituitary disease. One delegate did not like the use of the word “disease”, as she found it too negative. Another delegate reported that patients in her country were reluctant to tell their personal stories. Methods of obtaining the best care and the latest medications differ depending on the medical care system in each country. But wherever they were from, everyone agreed that pituitary patients need speedier diagnosis and access to expert treatment. We all felt the need for greater awareness of pituitary disorders among the medical community and the general public.
This third conference is the last to be wholly sponsored by Novartis Pharmaceuticals. While we are all grateful for their generous support in getting the organization off the ground, we are also looking forward to the independence we will achieve with more diversified funding.
A Steering Committee has been formed and is in the process of setting up the basic structure of the organization, developing an awareness campaign, and planning for a future summit. Going forward, this group will be called the World Alliance of Pituitary Organizations, WAPO. As the group grows, we look forward to more awareness and treatment for pituitary patients around the world.
Author: Ellen Koretz Whitton, CSRF Director, Winter, 2014