Florida

Orlando, Florida

Please join Florida Rare Action Network for Rare Disease Day Advocacy Event on February 28, 2019 from 10:00am-1:30pm at the Heart of Florida United Way, Dr Phillips Conference Room, 1940 Traylor Blvd, Orlando, FL 32804. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Florida.

REGISTER HERE

Fran Hokkanen
Florida State Co-Ambassador
fran.hokkanen@rareaction.org

Jhoanny Cardenas
Florida State Co-Ambassador
jhoanny.cardenas@rareaction.org

Gainesville, Florida

Please join Florida Rare Action Network for Rare Disease Day Event on February 28, 2019 from 10:00am-1:00pm at University of Florida, Broad-Bussel Atrium, Biomedical Sciences Building, 1275 Center Drive, Gainesville, FL, 32611. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event. Poster presentations of rare disease research, photo booth, face painting and food and beverages for all lo enjoy and celebrate Rare Disease Day!

REGISTER HERE

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 third edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.