Navigating life with a rare disease can feel overwhelming, but you don’t have to do it alone.
We have gathered helpful resources to support individuals and families across our state and beyond. Here you’ll find state resources that benefit the rare community, opportunities for grants and financial assistance, and national resources that connect you to broader support, advocacy, and information. Our goal is to make it easier for you to find the tools and connections you need on your rare journey. Let us know if you have a resource to add. We'll continue to add resources so be sure to check back!
Food support options across the state that help families access food. These resources are especially helpful to help ensure no one goes hungry while managing care or navigating complex medical issues.
Information on programs that provide financial support to individuals and families with rare disease-related needs. This includes grants for medical bills, equipment, travel for treatment, respite care, utility assistance, and other emergency needs.
Statewide supports that serve people with rare conditions and other disabilities. This includes disability advocacy organizations, parent support networks, aging and disability services, educational resources, and community programs rooted in Oklahoma. While not all are rare disease-specific, these local partners play a vital role in connecting families to services close to home.
Key national and global organizations leading policy, awareness, research, and community support for rare diseases.
Additional supports that can benefit rare disease patients and families. These resources help families navigate everyday life alongside navigating rare.