Florida Rare Action Network

03/07/2026

Proud to have been part of this great event for Rare Disease Day 2026!

02/28/2026

02/28/2026

Zebras Out! for Day 2026!

National Organization for Rare Disorders, Inc. (NORD)

02/28/2026

We can do better, Florida! awareness!

Today is . 💜 Over 30 million Americans live with rare diseases, and too many still face barriers to care simply because of where they live.

NORD’s State Report Card highlights both the progress we’ve made and the urgent gaps that remain. Every patient, in every state, deserves equitable access to care.

See how your state is doing and join us in calling for stronger protections: https://rarediseases.org/driving-policy/nord-state-report-card/

02/28/2026

Individual rare diseases are rare, but altogether they are not: 1 in 10 Americans is living with a rare disease.

Meet the Faces of Rare at rarediseaseday.us and add your own to our celebration wall this .

02/28/2026

Despite a blizzard sweeping through the Northeast, nothing kept advocates and lawmakers from Tuesday’s Congressional briefing.

In honor of , NORD convened a standing-room-only session led by CEO Pam Gavin to spotlight the urgent challenges and real solutions shaping rare disease research, diagnosis, and access to care.

The discussion ran more than 30 minutes over as attendees leaned into critical issues including genetic testing, newborn screening, and accelerating treatment pathways for ultra-small patient populations.

Pam was joined by Rohini Kosoglu, Advocacy Chair of The DAND Alliance, who spoke as a rare parent and former government leader, and Theresa Strong, Executive Director of The Foundation for Prader-Willi Research. Theresa shared her journey as both a rare parent and researcher whose natural history study helped support a recent FDA product approval. Their stories were powerful reminders of how advocacy and science together drive progress.

Dr. Ada Hamosh, NORD recipient, renowned geneticist, and Director of the NORD Rare Disease Center of Excellence at Johns Hopkins Medicine, brought the realities of rare disease care directly to Congress.

Through compelling patient stories from her clinic, she underscored what access to coverage for medications and screenings truly means for families. She closed with a clear call to action, outlining the legislation Congress must advance to ensure timely diagnosis, equitable access to care, and sustained innovation for millions of Americans living with rare diseases.

We were proud to have Dr. Hamosh represent NORD’s collaborative network of 46 Rare Disease Centers of Excellence before Congress.

Thank you to everyone who joined us on Capitol Hill for this important briefing. NORD remains committed to working alongside lawmakers on both sides of the aisle to advance meaningful solutions for individuals and families living with rare diseases.

You can take action on federal and state policy alerts today, here: https://bit.ly/3ST0XKV (scroll to the bottom for federal alerts)

Alone we are rare. Together we are strong.

02/28/2026

Day 2026!

National Organization for Rare Disorders, Inc. (NORD)

02/28/2026

It's Rare Disease Day 2026!

Zebras out,

National Organization for Rare Disorders, Inc. (NORD)

02/27/2026

Dr. Eric Green gave an enlightening overview of the history of genomic medicine and what it means for the future (of rare disease patients).

- Florida Institute for Pediatric Rare Diseases - FSU Symposium to recognize Rare Disease Day 2026.

02/27/2026

Tomorrow is officially Rare Disease Day in Florida! Thank you State Representative Adam Anderson for your efforts for the rare community!

02/27/2026

Excited to be part of the Rare Disease Day celebration at Florida Institute for Pediatric Rare Diseases - FSU!

National Organization for Rare Disorders, Inc. (NORD) Florida Rare Action Network