Collaboration – between patient organizations and between patients, medical professionals, and others – was the theme of the 2nd annual Summit of the World Alliance of Pituitary Organizations (WAPO) held this past May in Amsterdam. When we share our knowledge and experience, everyone benefits. I attended to represent CSRF, which is a founding member.
In its first year, WAPO prepared a template for a letter which patients can carry when traveling, to inform medical personnel about their illness in the event of an emergency. We developed a brochure and website, which guides users to organizations serving their country and materials in their languages, and a worldwide calendar of events of interest to pituitary patients. We published 3 newsletters sharing activities done by our member organizations. WAPO members attended several international conferences.
In the coming year, WAPO will expand its website (www.wapo.org) to include information about clinical trials, add doctor’s articles and patient stories to our newsletter, and have representatives attend additional relevant meetings throughout the world, including the 18th International Congress of Endocrinology in Cape Town, South Africa. While the website is now in English, translations into many languages are being developed. Groups in other countries will be recruited.
Among the presenters was Chris Yedniak, Doctor of Nursing Practice, who has contributed an article elsewhere in this newsletter about FINE, a new international organization of endocrine nurses, and Dr. Onno Meijer, who is doing promising research into better treatment for adrenal insufficiency.
The WAPO Summit was an exciting opportunity to meet people from all over the world who share our passion for improving care and support for pituitary patients. While the issues confronting patients in different places are not always the same, pituitary disease knows no boundaries and together, we can make life better for patients no matter where they live.
By Ellen Whitton, Summer, 2017