National nonprofit representing individuals and families impacted by rare diseases. Their website has lots of helpful information on understanding and living with rare disease in English and Spanish. Use the State Resource Center to find free and low-cost programs by state. They have several financial assistance programs to help cover costs of life-saving medication, caregiver aid or respite care, and educational support. The NORD Support Helpline offers help accessing programs from an Information and Resource Services team member. They also have lots of information on rare disease research and joining a clinical trial or study.
Nord Support Helpline: (800) 999-6673
Español: (844) 259-7178
rarediseases.org