Video

Explore how artists with rare diseases use accessibility tools and techniques to empower their advocacy and express their journeys through art. Learn how these methods can help anyone affected by rare diseases to share their experiences and advocate through art. Highlights of this webinar include: - Insightful stories on accessible creativity and advocacy from artists with rare diseases - Resou...

Rare Across America 2024: General Training Webinar

June 27, 2024: RDLA Monthly Webinar

This webinar officially introduces our LGBTQIA program, Pride in Rare, to our community! We celebrate Pride Month and share the importance of a program serving those that are in both the LGTQIA and rare disease communities. We are joined by several speakers in our community, William Romero (aka Daisy-Bility), Carter Hemion, and Katrina Byrd, in addition to our EveryLife Foundation's Priscilla R...

Dominique Pichard

Adora Ndu

Christine Waggoner

Ethan Perlstein

Annie Kennedy

Michael Pearlmutter, EveryLife Foundation for Rare Diseases: Introduction Jason Menzo, Foundation Fighting Blindness: LOANS for Biomedical Research Act, H.R 7539 Dylan Simon, EveryLife Foundation for Rare Diseases: Updates on Mark-Ups and Rare Disease Center of Excellence Jennifer Leib, Innovation Policy Solutions: FDA’s Laboratory-Developed Tests (LDT) rule Priscilla Rodriguez, EveryLife Found...

Scientific Workshop Brings Together Diverse Voices to Discuss 'Ultra-Rare' Landscape On May 21, 2024 the EveryLife Foundation convened the 14th Scientific Workshop, focusing on Therapy Development for Small Populations: Evidence, Implications, & Policy in Characterizing Ultra-Rare. We were joined at the National Press Club by over 90 members of the rare disease community, including leaders in t...

Intro to Advocacy

Lani Knutson: Cure CMD Sarita Edwards: E.WE Foundation Cory Lewis: Red Moon Project

Tyler Ordonez - Youth and Teen Advocacy Day

April 25th, 2024: Monthly RDLA Webinar

2024 #RAREis Scholarship: Application Overview

March 21st, 2024: Monthly RDLA Webinar

Rare Disease Week 2023

Rare Disease Week 2024

Legislative Conference 2024 - Opening Keynote Legislative Outlook

Legislative Conference 2024 - Deep Dive Policy Ask 1 and 2

Legislative Conference 2024 - Deep Dive 3

Legislative Conference 2024 - Deep Dive 4

Legislative Conference 2024 - Emerging Policy and Closing Remarks

Rare Disease Week 2024 - Documentary Screening

Sylvie Leyerle [Rare Artist 2023]

Seth Bailey [Rare Artist 2023]

Maya Rivera [Rare Artist 2023]

Madison Cooke [Rare Artist 2023]