MyGene2, a portal through which families with rare genetic conditions — and who are interested in sharing their health and genetic information — can connect with other families, healthcare providers and researchers: https://mygene2.org/MyGene2.

Putting Rare Disease Patients First (PRDPF), for patients with rare diseases: http://www.puttingrarediseasespatientsfirst.org.

National Organization for Rare Disorders (NORD), which provides information and support to patients and families affected by rare diseases: https://rarediseases.org.