Newsroom and Resources

Rare Disease Newsroom

Educational and Practical Resources

Original Research

Rare Opportunities in Primary Care, formerly called the Association for Comprehensive Care in Rare Diseases (ACCORD), has conducted its own original research on issues related to primary care for patients with rare diseases. 

Poster: Common Primary Care Issues That Arise When Treating Patients With Rare Diseases

White Paper: Rare Diseases: Common Medical Needs

White Paper: How Do Primary Care Clinicians Get Information on Rare Diseases?

Governmental/Organizational Resources


Genetic testing

Optimizing care for pediatric patients

Referral networks

Transitions of care



Financial resources

Other Suggested Reading

Related Organizations