Florida Rare Action Network

09/15/2025

Today marks the start of National ! Join us as NORD Rare Action Network State Ambassador for Florida, Jhoanny, shares a special message in English and Spanish to celebrate the rich contributions of Hispanic Americans in the rare disease community.

07/09/2025

How will the Sunshine Genetics Law benefit the community?

1) Provide whole genome sequencing for newborns.

2) Decrease the diagnostic timeline to begin treatment and therapies.

3) Provide earlier treatment/therapies can greatly increase the health outcomes for patients.

4) Establish a consortium that brings together geneticists, and physicians from Florida's public universities and children's hospitals to share knowledge and increase understanding of rare diseases.

5) Changing the lives of countless families for generations to come.

07/09/2025

Today's celebration at FSU College of Medicine to highlight the codification of the FSU Institute for Pediatric Rare Diseases and the passing of the Florida Sunshine Genetics Act HB907.

07/09/2025

Excited to join the FSU Institute for Pediatric Rare Diseases and State Representative Adam Anderson to share in this press conference to highlight this awesome effort to further the newborn screening efforts that will greatly reduce the diagnostic journey for (potentially) rare families!

We are kicking off our “Sunshine Genetics Act” road show making a stop at each consortium board member’s organization!

The first stop is FSU College of Medicine & FSU Institute for Pediatric Rare Diseases, then heading to Miami to be with Nicklaus Children's Hospital, FIU Herbert Wertheim College of Medicine, and University of Miami Thursday. From there we’ll be at USF Health Morsani College of Medicine and UF College of Medicine.

03/01/2025

Less than five minutes to have YOUR VOICE heard!

Tell Congress to increase access to quality health care and treatment for those living with rare diseases ->

NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medic...

03/01/2025

Rare Disease Day at FSU provides future promise for affected families By: Robert Thomas | Published: February 28, 2025 | 5:43 pm | SHARE: Rare Disease Day, recognized globally on the last day of February since 2008, is intended to raise awareness to the approximately 7,000 known rare diseases affect...

02/28/2025

A huge THANK YOU to FSU Institute for Pediatric Rare Diseases and State Representative Adam Anderson for their commitment to changing lives in the rare community!

02/28/2025

Research leads to treatment. Posters on display for the 2025 Symposium. Thank you FSU Institute for Pediatric Rare Diseases and State Representative Adam Anderson

02/28/2025

How does research make a real world impact?! Simply amazing!


State Representative Adam Anderson

02/28/2025

National Organization for Rare Disorders, Inc. (NORD), Leah Barber, Director of Grassroots Advocacy, providing an overview of all the wonderful ways NORD is making an impact in the Community.

02/28/2025

Amazing research overviews about disorders related to pediatric seizures here at FSU Institute for Pediatric Rare Diseases Symposium!

02/28/2025

At the FSU Institute for Pediatric Rare Diseases Symposium -- in awe of the team of people working for treatments for pediatric brain cancer.