NORD CEO Statement on Rare Cancer Day

Today, on Rare Cancer Day, I am proud to recognize the 30 organizations that make up the NORD Rare Cancer Coalition.

Rare cancers are part of the family of more than 10,000 rare diseases. Every pediatric cancer is rare. Together, rare cancers represent one in four cancer diagnoses in the U.S. Nearly everyone knows a family member, friend, or colleague touched by a rare cancer – and that should concern us all.

The toll is devastating. At NORD, we see it every day: families with limited options, patients facing uncertainty, and communities mourning lives cut short. Investment in rare cancer research fuels progress not only for rare cancers but also for more common cancers and diseases. That’s why NORD is calling on Congress to increase National Institutes of Health (NIH) funding for rare cancer research.

We thank our Coalition members for their ongoing advocacy, and U.S. Representatives Mike Kelly (R-PA), Brian Fitzpatrick (R-PA), Debbie Wasserman Schultz (D-FL), and Debbie Dingell (D-MI) for championing this year’s Rare Cancer Day resolution. May the day come when every cancer and rare disease has effective treatments and cures.

Alone we are rare. Together we are strong.

Sincerely,

Pamela Gavin
Chief Executive Officer
National Organization for Rare Disorders (NORD)