Disabilities
Rare Disorders
Navigating life with a rare disease can be overwhelming, especially for students. With nearly 7,000 rare conditions identified, awareness, diagnosis, and access to support are all essential. We’re here to connect families and educators with the resources that matter.
Understanding Rare Disorders in Education
Rare diseases may be uncommon, but for the students and families they affect, the challenges are very real. Because these conditions are so infrequent, many go undiagnosed or misdiagnosed, and effective treatments—particularly medications—can be difficult to access.
In educational settings, students with rare conditions may qualify for support under the Individuals with Disabilities Education Act (IDEA) if their diagnosis impacts their ability to learn. Since there is no specific “rare disorder” category under IDEA, students must qualify under one of 13 existing disability classifications.
Learning more about rare conditions and the resources available can make a meaningful difference.
Helpful Resources for Families and Educators
Explore these trusted organizations and tools to learn more about rare disorders, special education services, and how to support students with unique needs.
Center for Parent Information and Resources (CPIR)
A hub of parent-friendly materials, CPIR offers a helpful fact sheet about rare disorders and guides for navigating special education.
National Organization for Rare Disorders (NORD)
NORD’s Rare Disease Database provides easy-to-understand summaries of over 1,200 rare diseases. While not exhaustive, it’s a valuable place to start learning.
Genetics and Rare Diseases Information Center (GARD)
GARD offers a short, clear video on how to seek help for undiagnosed or rare disorders. Their website includes FAQs, condition guides, and links to genetic specialists.
Students Living with a Genetic Condition: A Guide for Parents
This guide from the Genetic Alliance helps parents understand how to support their child in school and advocate for services.
U.S. Orphan Drug Act Overview
Passed in 1983, the Orphan Drug Act encourages the development of treatments for rare diseases. Learn how this law has opened doors for families seeking medical solutions.