News and best practices from members of the World Alliance of Pituitary Organizations – WAPO – and other interesting global developments.
One of the most valuable things you can do to help the pituitary community is share your own experience. What you have lived through helps others understand the realities of living with acromegaly, or any other disease. It helps clinicians see challenges that never show up in a lab result and helps make sure that programs and services are built on patients needs. Taking part in research and using your voice is one of the most direct ways to do that.
This initiative comes from Margarita Vasquez, from FAETH (Fundacion de Apoyo a Enfermos con Transtornos Hipofisiario), an Ecuadorian foundation and WAPO member, that supports patients with pituitary disease. In this initiative, the rare disease community in
From our friends at the Pituitary Foundation in the UK comes this significant initiative to keep pituitary patients safe by alerting others to their condition. These new products include alert wristbands and a case to carry
Why is it important to know about the symptoms of hypercortisolism and its clinical consequences? And why is early detection so critical? The answers to these vital questions are highlighted in a new web resource
If you suffer from an adrenal disease or would like to learn more about it, AdrenalNET offers comprehensive, reliable, easy to access scientific and general information. AdrenalNET is an initiative founded in The Netherlands and fast
From The French Acromegaly patient organization, Acromegales, pas seulement – This is an excellent awareness video from French acromegaly patient organization “Acromegales, pas Seulement” on the symptoms of acromegaly. It is a campaign by the association APS
From Sandra Mesri, president of Apehi, (The Argentine Asociation for Patients Affected by a Pituitary Disorder) comes a new promotional video. Sandra tells us their objective is to get the word out with relevant images
From the desk of JD Faccinetti cofounder – This article on the Brazilian Medical Council recent decision to approve telemedicine services comes to us from Nathalia Kneipp in Brazil. The article was recently published in
Margarita Vazques de Amoroso, founder, and president of Faeth in Ecuador sent us some information on their monthly meetings. “We try to get together monthly to share our experiences and knowledge about how to
A campaign from Spain to raise awareness of acromegaly is up for an award. It is very nicely done! For those of you who speak Spanish, the stories are poignant. We’re working on our Spanish
A great video from UK contributor Dan Jeffries to mark Acromegaly Day November 1, 2018. Learn more about Dan here.
Patient and advocacy organizations around the world are poised to recognize Nov 1 as Acromegaly Day with awareness programs that aim to spread information and awareness on this tough disease. The World Alliance of Pituitary Organizations – WAPO
The World Alliance of Pituitary Organizations’ September 18 newsletter Edition 7, “Global Pituitary Voice” is now available. Read about activities from pituitary patient organizations around the world, share ideas, and learn about upcoming events. Download it