Florida Rare Action Network

02/19/2026

02/19/2026

Come celebrate with us!

🌍 Rare Disease Day 2026
Join us on Friday, February 27 as we highlight how IPRD is advancing research to combat rare diseases impacting 30 million Americans through innovation and collaboration.

📧 Email: IPRD@med.fsu.edu
🅿️ Complimentary parking available in Spirit Way Parking Garage
FSU College of Medicine FSU Health Florida State University Division of Research

02/14/2026

TAKE ACTION NOW!

We need your voice to help pass a critical piece of healthcare legislation through Congress this year, the Medical Foods and Formulas Access Act (H.R. 5684/S. 3304). This bill ensures that medically necessary nutrition is treated as essential healthcare, and your support is needed now to help it move forward. Contact your lawmaker today and ask them to support this bill!

02/12/2026

Doing a great job explaining how to use the NORD 2025 State Report Card as an advocacy tool!

Check out the website: https://rarediseases.org/driving-policy/nord-state-report-card/

Driving change in your state starts with understanding the policies that impact the rare disease community.

Join NORD this Thursday at 1 p.m. ET for a state advocacy webinar featuring the release of our annual State Report Card: https://bit.ly/4r3C5Qt

02/12/2026

Join us Feb 27, 2026 to celebrate Rare Disease Day! Please RSVP -->
https://fsu.qualtrics.com/jfe/form/SV_bPWVvWak1fJnwUe

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...

10/13/2025

Our Virtual Turkey Trot is back for year two! 🦃 Join from anywhere, Nov. 22-30. Walk, jog, run, or roll at your own pace to support NORD and the 1 in 10 Americans living with a rare disease.

Register by Oct. 24 to get your T-shirt in time for Thanksgiving! Sign up today: https://donate.rarediseases.org/TurkeyTrot2025

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...