National Organization for Rare Disorders (NORD)

For over 30 years, NORD has led the way in empowering the rare disease community. NORD connects the community, engaging patients with those seeking to help them, and working with all stakeholders to drive progress for patients. NORD educates patients, students, and medical professionals, and discovers innovative ways to meet rare disease challenges.
“Alone we are rare. Together we are strong.”™

Genetic Alliance

The Genetic Alliance is an organization devoted to promoting optimum health care for people suffering from genetic disorders. The Genetic Alliance network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. This network is a dynamic and growing open space for shared resources, creative tools, and innovative programs.

Global Genes Undiagnosed Patient Program

As a leading rare disease advocacy organization, Global Genes is seeking to proactively support our RARE community members in their efforts to attain critical genetic testing that can aid in a diagnosis that has eluded them through prior testing.

Syndromes Without A Name (USA)

Syndromes Without A Name (SWAN) USA offers support, information and advice to families of children living with a syndrome without a name. These are described in many different ways, such as undiagnosed syndrome, unknown diagnosis, mystery diagnosis. SWAN also advocates for changes in the medical community that will benefit undiagnosed individuals.