Patient and advocacy groups observe pituitary awareness month

From the editors: In what is now a yearly occurrence, pituitary groups and industry from all over the world mark October as pituitary awareness month. “The hope in doing this work is to organize a joint effort to maximize the opportunity to talk with a unified voice and increase awareness of pituitary diseases,” said JD Faccinetti, Chairman and chief editor of Pituitary World News. “The challenge is to do it in a way that will resonate with a broader audience. We don’t want to be talking to ourselves,” he added. 

It has also been part of the mission of many advocacy organizations and one of the main reasons we launched PWN: to reach an audience that pituitary conditions have not touched, educate, inform, and considerably reduce the time it takes to diagnose these challenging diseases. As we all know, it can take up to ten years on average for some conditions. These are just some examples of the efforts highlighted for this month:

 

Our friends at the Pituitary Foundation in the U.K. have assembled a brilliant campaign full of resources and engagement initiatives.  Read more about their charity partner/volunteer pack, and all their events, including great ideas on how people can get involved to raise awareness; of course, if you are in the UK,  please join them.

Leading advocacy organizations like the Acromegaly Community and the CSRF (Cushing’s Support and Research Foundation) in the USA deliver patient educational programs, webinars, and talks specifically designed to focus on these communities’ many needs, i.e., treatment, access, resources, help, etc.  Join the many CSRF initiatives by visiting the Website   

Tune in and register for the PAF (Patient Advocate Foundation) event on Monday, Oct 17, where Jill Sisco, president of the Acromegaly Community, teams up with the PAF to discuss Medicare insurance issues.  Register here.

 

WAPO (World Alliance of Pituitary Organizations), a global membership group dedicated to supporting advocacy organization leaders, created collateral materials in several languages to make it easy for member organizations worldwide to promote the month and engage their patients in spreading the word.  Please click here if you’d like to learn more about WAPO.

 

It is important to note that these activities don’t just happen in October. For all these organizations, advocacy, awareness, and support for their constituencies are a 24/7 job, 365 days every year. We continue to support and amplify these efforts and provide our brand and perspectives of educational, engagement, and informational resources through 650 articles and over 150 podcasts, a bi-monthly live-talk program, and initiatives to improve care, therapies, access, and knowledge of pituitary disease. Tune in on Thursday, October 13, at 3:00 pm (pacific) for a live show and a lively discussion of pituitary awareness initiatives. 

So please engage your community and your family and friends to tell them about the pituitary gland. Read and download these articles, podcasts, and advocacy material. Pass them along to anyone that will listen. We all must do our part in making these diseases easier to recognize and less rare.  

We also want to mention our pharmaceutical industry partners (Recordati, Pfizer, Amryt, Crinetics, Corcept, Ipsen, and Ionis). They have provided invaluable informational resources and support for these organizations and their patients. And thank you to all the people around the globe for whom pituitary awareness is not just October, and make this effort their mission every day, every week, every month, every year!  

 

Lewis S. Blevins, jr. M.D. and Jorge D. Faccinetti, co-founders. 

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