In late 2023, PPA launched a survey to gather information to develop a strategy to support metastatic patients following the announcement of the cease of production of Azedra, the only FDA-approved treatment for metastatic & unresectable pheo and para. Some key findings are below. See the link for all of the results.

• Fifty-three clinicians from twenty-eight centers participated globally
• 89% of clinicians had recommended PRRT to eligible patients, but indicated only 77% of patients received it
• 36% of respondents received insurance denial for PRRT
• 13% of respondents received insurance denial for a clinical trial

Special thanks to the clinicians who participated in this survey. The Advocacy Committee will utilize the results to develop a strategy to support metastatic patients.

Recruiting Committee Members!

We are recruiting members for the following committees. Join one of these phearless committees!

• Inclusion, Equity, Diversity & Accessibility Committee - Learn More!
• Awareness Week Committee - Learn More!
• Alliance Gala Committee - Learn More!

Phearless Constituents Head to DC for Rare Disease Week!

A handful of phearless constituents are heading to Washington, DC next week where they will work with other rare disease advocates to talk to legislators about issues facing our community! This year’s event is an especially important one: our metastatic patients no longer have access to a therapy approved by the FDA for the treatment of pheo para, and we’re hoping to work with our legislators to keep other therapies accessible and as affordable as possible.

Stay tuned for more info on how you can participate in Rare Disease Day on Feb 29 to support their efforts virtually! Special thanks to Bessie Lewis for hosting our constituents. Learn more here.

Stephanie Alband, Executive Director Takes Office as President of INCA

Stephanie Alband will begin her term as President of the International Neuroendocrine Cancer Alliance (INCA). PPA is a member organization of INCA, which serves as the global voice for patients with neuroendocrine cancer and genetic neuroendocrine tumors (NETs).

Stephanie, pictured here with INCA Executive Director, Teodora Kolarova, has previously served on the INCA Board of Directors and as Chair of the Communications Committee which leads NET Cancer Day. 

Stephanie states, “It is an honor and privilege to represent the collective voice of 37 patient advocacy organizations globally. Because of the tireless work of these organizations, NETS are not considered as rare as they were once believed to be. This role also provides an opportunity to ensure lesser-known NETS, such as pheo para, and genetic NETS are accurately represented.”  

Leadership from the Pheo Para Alliance and SDHB Pheo Para Coalition recently met and are strategizing ways to work collaboratively to further the missions of both organizations. The mission of the SDHB Pheo Para Coalition is to educate healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact on pheochromocytoma and paraganglioma. The SDHB Coalition is active in sponsoring and supporting research in this underserved area with the hope of finding better treatment options and/or a cure.  Learn more about the Coalition here.   

Linda Rose-Krasnor, Chair of the PPA Board of Directors stated, “Given the rarity of pheo and para, it makes sense to band together with like-minded organizations to support patients and caregivers and assist clinicians and researchers to provide patients with excellent clinical care and better health outcomes.”  

Stay tuned for more information regarding this emerging collaboration.         

SAVE THE DATE!

Feb 29, Rare Disease Day

May 6 -19, Virtual Phitness Challenge

Aug 25-29, Awareness Week

Sep 21 - Alliance Gala

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