Pamela Gavin: 1 in 10 Americans Live With A Rare Disease – That Is Not Rare, That Is Public Health
Pamela Gavin, Chief Executive Officer at National Organization for Rare Disorders (NORD), shared on LinkedIn:
”Today is Rare Disease Day.
1 in 10 Americans live with a rare disease.
That is not rare.
That is public health.
This year’s theme, ‘More Than You Can Imagine’, reflects the reality millions of families face: delayed diagnoses, limited treatments, fragile access.
- Rare disease is more complex than many realize.
- More costly.
- More interconnected than our systems are built to manage.
It is also more solvable than we are currently delivering.
Breakthrough science is accelerating.
Families should not have to wait for systems to catch up.
Progress depends on sustained NIH investment.
- A strong, fully staffed FDA.
- Policies that reward responsible innovation.
- Manufacturing that can scale.
- Coverage that ensures access.
A therapy approved is not a therapy accessed.
Rare disease is not niche. It is a national and global health priority hiding in plain sight and meeting this moment requires coordinated leadership across sectors.
For 17 years, NORD has served as the official U.S. sponsor of Rare Disease Day, in partnership with EURORDIS-Rare Diseases Europe and its alliance partners worldwide.
That role is both a privilege and a responsibility.
Today, we celebrate this community whose persistence has reshaped what is possible.
And we recommit to building the infrastructure, partnerships, and policy environment that turn breakthroughs into access and momentum into lasting progress.
More than you can imagine.
But not more than we can solve if we choose to build a system worthy of the community it serves.”
Stay updated with Hemostasis Today.
-
May 27, 2026, 09:58Omid Seidizadeh: Take The EAHAD Survey on Access to Diagnosis and Treatment for VWD Europe
-
May 27, 2026, 09:51Richard Benjamin: RedeS Phase III Trial Reaches Major Milestone in Advancing Pathogen-Reduced RBCs for Transfusion
-
May 27, 2026, 04:47Daniel Torrent: The Overlooked Epidemic of Post-Thrombotic Syndrome
-
May 27, 2026, 04:45Graziella Pompei: Is Aspirin Still a Valid Alternative to Clopidogrel in PCI with DES Implantation?
-
May 27, 2026, 04:40Kausik Ray: Phase 1 Trial Highlights Anti-Inflammatory Effects of Ruvonoflast
-
May 27, 2026, 04:29Francisco Chacón-Lozsán: High-Sensitivity Troponin and the Evolving Management of NSTEMI
-
May 27, 2026, 04:14Michael R. Jaff: HI-PEITHO Trial and NEWS Score Insights on Advances for Intermediate-Risk Pulmonary Embolism
-
May 26, 2026, 16:45Ashley George: Take the Leap for Thrombosis UK
-
May 26, 2026, 16:40Hamed Helisaz: Machine Learning for Detecting Missing Heart Medications