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Resources

The Minnesota Rare Disease Advisory Council (MNRDAC) provides educational resources and support tools for the rare disease community, policymakers, and providers to address barriers to care. We are continually gathering resources relating to diagnosis, access to treatment, services, and education. If you have a rare disease resource suggestion, please contact us: [email protected].

Actual patient photos used with permission from Brave Souls Photography

Cover image for Rare Disease Health Care Access Study 2020

2020 Rare Disease Frontline Provider Survey Key Takeaways

There are over 7,000 rare diseases in existence with over 25 million patients affected. Yet, healthcare access and quality of life are elusive to many rare disease patients, and only 5% of rare disease patients have an approved treatment option.

Rare isn't so rare infographic cover image

Infographic: Rare isn’t so rare

Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the U.S. is considered rare. Learn more in this infographic.

Patient Resources

These are just a few of the many rare disease resources available. If you have a rare disease resource suggestion, please contact us at [email protected].


Provider Resources

Doctors are commonly taught ‘when you hear hoofbeats, think horses not zebras,’ which suggests that they should first consider a more common diagnosis. MNRDAC exists to support the medical community when the hoofbeats belong to a zebra. MNRDAC collaborates with state medical schools, schools of public health, and Minnesota hospitals that provide care to persons with a rare disease and shares resources on research, diagnosis, treatment, and education relating to rare diseases.

If you have a rare disease resource suggestion, please contact us at [email protected].

An assortment of photos with white borders. The photos are of rare disease patients, children.