The Rare Disease Curriculum is a seven-module, asynchronous online learning program developed in collaboration with the Rare Disease Diversity Coalition (RDDC) to equip healthcare professionals, caseworkers, patients, caregivers, and advocates with foundational and applied knowledge across the rare disease landscape.

Designed for equitable access across diverse care settings and schedules, each module includes clear learning objectives, culturally appropriate content, and a knowledge check to validate comprehension. The curriculum’s goal is to close the persistent gap in rare disease education within the healthcare system- helping providers recognize warning signs earlier, correct common misconceptions, and connect patients to appropriate resources sooner, ultimately reducing diagnostic delays and improving outcomes for the millions of people affected by rare disease.

The Impact

Rare diseases affect approximately 30 million Americans — roughly 1 in 10 people — yet the healthcare system remains critically underprepared to serve them. Over 10,000 known rare diseases exist, and patients wait an average of 6–7 years for an accurate diagnosis, often consulting 17 or more specialists along the way. 95% of rare diseases lack an FDA-approved treatment, and the economic burden of delayed diagnosis can exceed over $500,000 per patient.

Despite this scale, most healthcare professionals receive little to no formal training in rare disease recognition, leaving patients vulnerable to misdiagnosis, isolation, and inadequate care. Gaps in physician awareness, limited access to specialized centers, and persistent misconceptions compound the challenge for patients and families already navigating extraordinary emotional and financial strain.

Module Overviews

This seven-module rare disease curriculum is designed to equip the rare disease ecosystem with foundational and applied knowledge across the full rare disease landscape. Delivered asynchronously online, the curriculum ensures equitable access across diverse care settings and professional schedules. Each module features clearly defined learning objectives, culturally appropriate content and design, and a pre and post test for completion.

Target Audience

• Patients & Families: Individuals living with rare diseases and their caregivers
• Healthcare Professionals: Physicians, nurses, genetic counselors, and allied health professionals
• Caseworkers and Case Managers (accreditation available)
• And anyone looking to expand their understanding of rare disease

Thanks to the generous support of the following partners,
this curriculum is being made available at no cost.

Thank You Current & Past Curriculum Supporters