Deals FDA Approves First Gene Therapy for Children with MLD & More — This Week in RARE Daily This Week in RARE Daily is a feature from Global Genes where you can get a quick […] Read more
Deals Rare, Ultra-Rare & Hyper-Rare: A Search for Paths Forward — 2024 NEXT Report Over 40 years after the Orphan Drug Act of 1983, the definition of rare disease as it […] Read more
Living with a RARE Disease Recapping Global Genes staff activities during Rare Disease Week Mackenzie Abramson provides a recap of Rare Disease Day and Rare Disease Week activities in Washington D.C. […] Read more
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