Scan of Pheochromocytoma Paraganglioma Experiences, SCOPPE, is a first-of-its-kind survey shared in the Summer of 2021. Over 270 patients responded over six weeks. Responses were solicited through social media, website and email channels. The goal of the survey is to explore the patient voice to verify, educate, explore connections and strategically guide the Pheo Para Alliance with the intention of improving clinical care and influencing future research interests.
Some initial findings can be found in the video here and more detailed information can be found on the site using the link below. Thank you to everyone who participated in the survey and special thanks to our dedicated committee.
We Need YOU to submit a Patient Video for Awareness Week!
Our 4th Annual Pheo Para Awareness Week is August 21-25. This year, we’re considering what the future might look like for those affected by pheo para, and we need your perspective for our Awareness Week video. What challenges are you facing? Do you envision them existing for patients a hundred years from now?
Pheo Para Alliance has received a donation for $30,000 to support its mission from the band New Found Glory! PPA is beyond grateful for all of the awareness and financial support from the band. These funds were raised from many different avenues, including from merchandise, raffle tickets and donations. The inspiration and driving force behind the partnership arose from Chad Gilbert, guitarist for the band and metastatic pheochromocytoma thriver. Chad and NFG - thank you - you are #phearless!
5 Years Since FDA Approval: What Have We Learned About Azedra
