Diagnosis Why Can’t People with RARE Diseases & Wheelchairs Fly Major Airlines? Sign Open Letter to Improve Accessibility on Airlines As an organization founded to gather together advocates for […] Read more
DEI Top 10 Takeaways from the 2023 RARE Health Equity Forum Whether you attended in person or watched the live stream, we hope that you now have ideas […] Read more
Diagnosis Top 10 Takeaways from the 2023 RARE Advocacy Summit Did you LEVEL UP while attending or live streaming the 2023 RARE Advocacy Summit? We certainly did! […] Read more
Diagnosis A Look Back and Forward for Health Equity at the 3rd Annual RARE Health Equity Forum The 2023 RARE Health Equity Forum will be held in San Diego, California, September 18 and 19. […] Read more
Diagnosis Navigating the 2023 Global Genes RARE Advocacy Summit: A Choose-Your-Own-Adventure Extravaganza! Welcome, brave adventurers, to the Global Genes RARE Advocacy Summit! Get ready to embark on a wild […] Read more
Diagnosis Why should RARE Disease dads attend the RARE Advocacy Summit during Week in Rare? 1. You will know you are not alone. As a rare disease dad myself (my son Lucas […] Read more
Diagnosis Collaboration Key Theme for RARE Advocacy Summit Sessions and Networking Opportunities The 2023 RARE Advocacy Summit will be held in San Diego, California, September 19-21. by Sravanthi Meka […] Read more
Diagnosis Congratulations to the 2023 RARE Champions of Hope The RARE Champions of Hope Awards celebrate, honor and recognize those in the rare disease community who […] Read more
Drug Development The Fierce Urgency of Now — The 2023 NEXT Report While fundraising is a key part of patient advocacy and drug development, time may be more important […] Read more