Rare disease advocates looking for personalized coaching, guidance on setting advocacy goals, or assistance in forging connections with legislators- Don't miss this opportunity to enhance your efforts & make a lasting impact!

To apply and learn more visit hubs.li/Q02sB7RQ0

Exciting opportunity from EveryLife Foundation: The #RareIs Scholarship Fund!

To learn more about the scholarship and how to apply visit everylifefoundation.org/rare-scholarsh…

Welcome Michael Pearlmutter, the new CEO of the EveryLife Foundation! 🎉

'As someone who has personally navigated the challenges of a rare blood disorder, I am deeply motivated to harness our collective power to make a significant impact'

Read more: bit.ly/3PGvkUl

Fireside Chat highlight: 'Patient-first innovation: FDA shifting rare diseases endpoints' with:

Julie Breneiser, Executive Director, Gorlin Syndrome Alliance
Jamie Sullivan, Senior Director of Public Policy, EveryLife Foundation

Register for #WorldOrphanUSA 👉 tinyurl.com/ytf27dud

Congratulations to the #MLD community on reaching this significant milestone representing the dedication and sacrifices of numerous individuals! 🙌

We were honored to be at the RDLA @EverylifeOrg #RareDisease Congressional briefing. Thank you for all your efforts to amplify the voices of patient communities, including #BarthSyndrome , and show that we are #NotTooRareToCare about! #RareDisease Day #RDW2024 #RareDC2024

If you’re attending #RDDNIH in person, check out the exhibits from Rare Diseases Clinical Research Network, NORD, EveryLife Foundation, Global Genes, GARD, CURE ID and others! You also can explore scientific posters, art and film from the #RareDiseases community!

In other news ... As we're wrapping up Rare Disease Week #RareDC2024 , The EveryLife Foundation team in Washington, D.C. is excited to attend the #RareDiseaseDay at The NIH, come say hi!

Happening now Rare Disease Congressional Caucus Co-Chair Rep. Doris Matsui sheds light on the importance of supporting the #BENEFITAct , #RAREAct , #ProtectRareAct Energy & Commerce Democrats Energy and Commerce Committee watch here: youtube.com/watch?v=yrV88S…

Today is Rare Disease Day! 🦓✨

Our team is in Washington, D.C., raising awareness, setting up shop at the NIH event, and teaming up with EveryLife Foundation for a delightful mid-morning coffee reception. Swing by and meet our smiling crew! #CareAboutRare #RareDiseaseDay

'Because of how few people are affected, all childhood cancers are considered rare, this is why I am proud to co-lead the Creating Hope Reauthorization Act' Nanette D. Barragán Energy and Commerce Committee Energy and Commerce Committee

The #PROTECTRareAct permits Medicare and Medicaid to use clinical guidelines and peer-reviewed literature to allow for coverage of rare disease treatments. Thank you Rep. Doris Matsui Dr. Neal Dunn Rep. Mike Thompson Rep. Mike Kelly for your support. Learn more: bit.ly/3SWm5Qw

The Accelerating Kids Access to Care Act #AKACA will allow pediatric providers to enroll more efficiently in multiple state Medicaid programs for a five-year period. Thank you Lori Trahan and Sen. Marinette Miller-Meeks for your leadership and support on this legislation.