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.”
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