Florida

Please join the  Florida Rare Action Network for our  virtual rare discussion groups that take place every other month. Join rare advocates to discuss challenges rare patients are facing in Florida and connect with others. Below are the dates and registration link for the meetings.

Wednesday, August 19, 2020 at 3:00pm EST
Wednesday, October 21, 2020 at 3:00pm EST
Wednesday, December 16, 2020 at 3:00pm EST

Register here for the meeting(s)

Jhoanny Cardenas
Florida State Co-Ambassador
[email protected]

Anne Rugari
Florida State Co-Ambassador
[email protected]

Fran Hokkanen
Florida Community Engagement Liaison
[email protected]

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Florida’s Rare Action Network to attend your event? Contact your State Ambassador today and learn more. Please check back regularly for news of upcoming events and activities in Florida.

Florida needs your help!
Utilize these Rare Action resources to put rare diseases on the map in your state. If you need further assistance  or have additional questions on how to take action in Florida, please contact your State Ambassador, Fran Hokkanen and Jhoanny Cardenas.

In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.