Advocacy and Education
Advocates for Medically Fragile Kids NC is a nonprofit organization that supports children with complex medical needs and their families. They work to improve access to home and community-based care, provide education, and promote policies that protect these children’s rights. Their goal is to ensure every medically fragile child in North Carolina can live safely and thrive at home.
The EveryLife Foundation for Rare Diseases is a nonprofit organization that works to advance research, treatment, and policy for people living with rare diseases. They educate and empower patients and families to advocate for better access to care and new therapies. Their goal is to make sure no one with a rare disease is left behind.
Global Genes is a nonprofit organization that supports people and families affected by rare diseases. They provide education, advocacy resources, and opportunities for connection within the rare disease community. Their goal is to promote awareness and help patients get access to better care, treatments, and support.