Florida

Florida Rare Disease Day Virtual Event

Friday, February 26, 2021
10:00am – 11:00am EST

Florida Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Florida legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on where Florida is currently in the legislative process to form a Rare Disease Advisory Council (RDAC) and discuss actions you can take to facilitate the effort to get an RDAC signed into law.

REGISTER HERE

Jhoanny Cardenas
Florida State Co-Ambassador
[email protected]

Anne Rugari
Florida State Co-Ambassador
[email protected]

Fran Hokkanen
Florida Community Engagement Liaison
[email protected]

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COVID-19 Resources & Information

State Resource Page

The Florida Department of Health has created this helpful resource
website in response to COVID-19.

https://floridahealthcovid19.gov/

What's Happening Now?

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.

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State Report Card

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.