Rare Disorders

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National Resources

EveryLife Foundation for Rare Diseases

1012 14th Street, NW, Suite 500
Washington, DC 20005
Phone: (202) 697-7273
Contact: Lindsey
Email: lcundiff@everylifefoundation.org
Website: https://everylifefoundation.org/

Foundation Fighting Blindness

7168 Columbia Gateway Drive, Suite 100
Columbia, MD 21046
Phone: (800) 683-5555
Email: info@FightBlindness.org
Website: https://www.blindness.org/

Foundation for Nager & Miller syndromes

Website: http://fnms.org/

Hope for Trisomy 13 & 18

Website: https://www.hopefortrisomy13and18.org/

Koolen-de Vries syndrome

Genetics Home Reference: https://ghr.nlm.nih.gov/condition/koolen-de-vries-syndrome

Lissencephaly

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/lissencephaly/

McCune Albright syndrome

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/mccune-albright-syndrome/
MAGIC Foundation: https://www.magicfoundation.org/Growth-Disorders/McCune-Albright-Syndrome-or-Fibrous-Dysplasia/

Microgastria

Genetic and Rare Disease Information Center: https://rarediseases.info.nih.gov/diseases/3640/microgastria-limb-reduction-defect

Moebius syndrome Foundation

Website: http://moebiussyndrome.org/

Nager syndrome

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/nager-syndrome/

National Reye’s Syndrome

National Reye's Syndrome Foundation: http://www.reyessyndrome.org/
National Organization for Rare Disorders: https://rarediseases.org/organizations/national-reyes-syndrome-foundation-inc/

Ohdo syndrome (SSBYS)

Genetics Homes Reference: https://ghr.nlm.nih.gov/condition/ohdo-syndrome-say-barber-biesecker-young-simpson-variant

Pierre Robin Sequence

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/pierre-robin-sequence/

Potocki-Shaffer syndrome

Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/9762/potocki-shaffer-syndrome
Potocki-Shaffer syndrome: http://www.potockishaffersyndrome.org/

PPP2R5D

Genetics Home Reference: https://ghr.nlm.nih.gov/gene/PPP2R5D#conditions
Jordan's Guardian Angels: http://jordansguardianangels.org/

Semi-lobar holoprosencephaly

Radiopaedia: https://radiopaedia.org/articles/semilobar-holoprosencephaly-2

SOFT

Website: http://trisomy.org/

Tetra-amelia syndrome

Genetics Home Reference: https://ghr.nlm.nih.gov/condition/tetra-amelia-syndrome

The 22q Family Foundation

Website: http://22qfamilyfoundation.org/

The International 22q11.2 Foundation Inc.

Website: http://www.22q.org/

The Menkes Foundation

23210 Daffodil Drive
California, MD 20619
Website: https://themenkesfoundation.org/

Trisomy 13 syndrome

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/trisomy-13-syndrome/

Trisomy 18 Foundation

Website: https://www.trisomy18.org/

Turner Syndrome

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/turner-syndrome/

Turners Syndrome Society of the United States

Website: http://www.turnersyndrome.org/

VACTERL Association

Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/5443/vacterl-association

Ventriculomegaly

The Fetal Treatment Center: https://fetus.ucsf.edu/ventriculomegaly

Online Resources

EveryLife Foundation for Rare Diseases

1012 14th Street, NW, Suite 500
Washington, DC 20005
Phone: (202) 697-7273
Contact: Lindsey
Email: lcundiff@everylifefoundation.org
Website: https://everylifefoundation.org/

Global Genes

28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone: 1(941) 248-7273
Email: careaboutrare@globalgenes.org
Website: https://globalgenes.org/

Mommies of Miracles

Website: http://mommiesofmiracles.com/

Rare Disease Clinical Research Network

Phone: 1(888) 205-2311
Email: GARDinfo@nih.gov
Website: https://www.rarediseasesnetwork.org/resources-for-patients-and-families

SADS Foundation

Sudden Arrhythmia Death Syndromes Foundation
4527 South 2300 East, Suite 104
Salt Lake City, UT 84117-4448
Phone: (801) 948-0654
Website: https://www.sads.org