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
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.
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.
Infographic for Providers: 2020 Rare Disease Health Care Access Study
Even when compared to adults with common chronic diseases, adults in Minnesota with rare diseases had significantly worse stigma, physical function, fatigue, and depression, and marginally worse anxiety.
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].
Community Support
Financial Support
Organizations
- EveryLife Foundation for Rare Diseases
- National Organization for Rare Disorders (NORD)
- NIH/GARD National Institute of Health (NIH) and Genetic and Rare Diseases Information Center (GARD)
Study/Survey Opportunities
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].
