Florida
State Ambassador: Jhoanny Cardenas
Jhoanny’s advocacy journey began after her son was diagnosed with adrenoleukodystrophy (ALD), inspiring her to turn her family’s experience into advocacy for others in the rare disease community. Working alongside fellow advocates, she engaged elected officials and supported efforts to add ALD and other conditions to Florida’s Newborn Screening Panel. As a NORD Florida volunteer co-ambassador, Jhoanny has helped advance Florida’s Rare Disease Advisory Council (RDAC), supported Florida Institute for Pediatric Rare Diseases initiatives, and championed legislation impacting the rare disease community. Her advocacy continues to be driven by her son’s legacy and a commitment to creating meaningful change for individuals and families affected by rare diseases.
Contact: [email protected]
State Ambassador: Fran Hokkanen
Fran’s advocacy journey began with her daughter’s birth, when medical uncertainty and an eventual rare disease diagnosis inspired her to support others facing similar challenges. After connecting with local leaders and joining the National Organization for Rare Disorders during Rare Disease Day, she became a dedicated advocate helping families navigate complex systems and amplify their voices. As a NORD Florida volunteer co-ambassador, she has helped advance a Rare Disease Advisory Council (RDAC) in Florida, supported the Florida Institute for Pediatric Rare Diseases initiatives, and championed legislation impacting the rare disease community.
Contact: [email protected]
Events in Florida
Are there events for the rare disease community happening in your state? Email [email protected] to share your event with us.
Events Recap Gallery
