Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.

We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

On May 9, 2016, Willow Cannan, the two-year-old daughter of Tom Cannan and Amber Olsen, was diagnosed with a terminal disease called Multiple Sulfatase Deficiency (MSD) — a rare genetic disease which left Willow’s body unable to process the natural cellular waste made in normal everyday organ functions.

After Willow’s diagnosis, Tom and Amber were determined to fight this disease in every possible way. In 2016, after meeting with researchers, doctors, and other parents with children with MSD from all over the world, Amber established the United MSD Foundation with a single yet powerful mission: to cure Multiple Sulfatase Deficiency.

Founded by two rare disease moms who saw the potential for a better way, the Rare Village is focused on serving rare families in their most important journey – that of their rare disease child.

The Rare Life is a nonprofit organization that provides emotional support for parents of children with medical complexities and disabilities.

Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.