EveryLife Foundation for Rare Diseases

Come join an amazing team! EveryLife Foundation for Rare Diseases is looking for an Annual Giving Manager.

Colorado mother & advocate Kate Holler knows how the Priority Review Voucher Program #PRV transforms children's lives. Congress holds the power to ensure its success. Tell Congress now is the time to renew #PRVProgram! Take Action: https://lnkd.in/gyQJv_K3 #Cures4RareKids, #HealEB

Are you passionate about celebrating diversity and tackling the unique challenges faced by those with LGBTQIA+ and rare disease identities? Join our Discord and Facebook communities today and be part of the conversation that drives real change! Together, we can raise awareness, foster inclusion, and make a difference. Discord: https://hubs.li/Q02VJL8n0 Facebook: https://hubs.li/Q02VJx870

It was an honor to panel at #BIOPatientSummit today, alongside Christina Hochul, Sue Peschin, and Amy Comstock Rick - cherished colleagues who’ve long led unparalleled efforts to “change the narrative for patient outcomes”. Thank you to Michele Oshman, John F. Crowley, Karin Hoelzer for shining a light on the policies of such critical importance to our patient communities.

What an exciting week for Rare Artist, powered by the EveryLife Foundation for Rare Diseases! We’re thrilled to announce the 2024 Rare Artist Finalists! You can view all the amazing finalists here: https://lnkd.in/dCvyhggJ This year, we received over 200 incredible entries, each sharing a powerful story about the rare disease diagnostic odyssey, barriers in accessing treatment, and the impact of advocacy. A special thank you to our judges, Alison St. Paul, Adare, Miriam Zimms, Dr. Carl Barnes, Megan Howard, and Roopa Ramamoorthi--PhD, PMP for their dedication throughout the judging process! And, to our truly incredible Patient Programs Intern, Savanna Coggins, for being my right hand and making this all possible. I’m currently headed to Houston to attend the National Organization for Arts in Health Annual Conference, where I’ll be representing Rare Artist and sharing some exciting updates. Art has such a transformative impact on health. Have you had a chance to express yourself today? 🎨

The Rare Pediatric Disease Priority Review Voucher Program #PRV gives hope to rare disease patients. You can amplify that hope. Tell Congress to take action and make a difference in rare disease patients' lives! Learn more and take Action: https://bit.ly/3Zx3EXr #Cures4RareKids #FriedrichsAtaxia

Learn more about the EveryLife Foundation's Scientific Workshops and catch up on last year's session about "Therapy Development for Small Populations: Evidence, Implications, & Policy in Characterizing Ultra-Rare" here: https://hubs.li/Q02VnQS_0 Learn more about the EveryLife Foundation's milestones and take part in our #EveryLIfe15for15 campaign here: https://hubs.li/Q02VnR3W0

In today's #IamBIO episode, hear from a family facing a frightening diagnosis and the biotech company offering them new hope. We also speak with an advocate fighting for policies that incentivize research and development in rare diseases. 🎧 Listen now: https://lnkd.in/dnfm7Xzz

We stand with rare disease advocates across Pennsylvania and the nation in thanking Senator Bob Casey for his leadership in supporting the renewal of the #PRV before it expires in December. Senator Bob Casey, thank you! Learn more here: https://bit.ly/3Zx3EXr #Cures4RareKids

Every day Congress delays renewing the #PRV is another day parents worry about finding a cure for their children. Tell your Senator to ACT NOW!   Take Action: https://bit.ly/3Zx3EXr Lesa Brackbill, M.A. #Cures4RareKids, #CureKrabbe, #CreatingHopeReauthorizationAct