Carter Centers for Brain Research in Holoprosencephaly and Related Brain Malformations

Collaborative initiative created to gather, analyze, and share information about HPE. Maintains an international registry and an ongoing HPE database. Supports and conducts research and maintains a network of Centers of Excellence.

Website

https://www.hperesearch.org

Phone

214-559-8411

Address

c/o Texas Scottish Rite Hospital
2222 Welborn Street
Dallas,
TX 75219-9982

March of Dimes

Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy.

Website

https://www.marchofdimes.org/

Phone

888-MODIMES (663-4637)

Address

1550 Crystal Drive, Suite 1300
Arlington,
VA 22202

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Website

https://rarediseases.org

Phone

203-744-0100; 800-999-6673; 844-259-7178 Spanish

Address

55 Kenosia Avenue
Danbury,
CT 06810-1968

The Arc of the United States

Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

Website

http://thearc.org

Phone

202-534-3700; 800-433-5255

Address

1825 K Street, NW
Suite 1200
Washington,
DC 20006