Rare Disorders

Resources Near You

Select Location >

National Resources

Aicardi Syndrome

Aicardi Syndrome Foundation: https://aicardisyndromefoundation.org/aicardi-syndrome/
Genetics Home Reference: https://ghr.nlm.nih.gov/condition/aicardi-syndrome
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/aicardi-syndrome/

Amniotic Band syndrome

Website: https://amnioticbandsyndrome.com/
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/amniotic-band-syndrome/

Anencephaly

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

Apert syndrome

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

Aplasia Cutis Congenita

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/aplasia-cutis-congenita/

Athrogryposis

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/arthrogryposis-multiplex-congenita/

Bilateral Renal Agenisis

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/renal-agenesis-bilateral/

Chromosome Disorders

Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/diseases-by-category/36/chromosome-disorders
Chromosome Disorder Outreach: https://chromodisorder.org/

Dandy Walker syndrome

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/dandy-walker-malformation/
Dandy-Walker Alliance: http://dandy-walker.org/

DiGeorge syndrome

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/chromosome-22q11-2-deletion-syndrome/

Dubowitz syndrome

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

Encephalocele

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

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/

Many Faces of Moebius syndrome

Website: http://www.moebiussyndrome.info/

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/

Pierre Robin Sequence

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

Pierre Robin Sequence Foundation

Website: http://pierrerobin.org.za/

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/

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

Mommies of Miracles

Website: http://mommiesofmiracles.com/

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

Share Pregnancy and Infant Loss Support

Website: http://nationalshare.org

Special Needs Moms for Moms

Website: http://specialneedsmomsformoms.com/

Support Group for Reye’s syndrome

Facebook:
REYE'S syndrome

Support Groups for Aplasia Cutis Congenita

Facebook: Aplasia Cutis Congenita Support Group

Support Groups for Asparagine Synthetase

Facebook: Asparagine Synthetase Deficiency (ASNS gene)

Support Groups for Athrogryposis

Facebook: Arthrogryposis

Support Groups for Bohring-Optiz syndrome

Facebook: Bohring-Optiz Syndrome Connection
Facebook: Bohring-Opitz Syndrome Support Group

Support Groups For Dandy Walker syndrome

Facebook:
Dandy Walker parents
Dandy-Walker Syndrome
Dandy Walker Syndrome, support Group!

Support Groups for Dubowitz syndrome

Facebook:
Dubowitz Syndrome Network

Support Groups for Encephalocele

Facebook:
Encephalocele Parent Support
Encephalocele Support

Support Groups for Lissencephaly

Facebook:
Families of Lissencephaly
Lissencephaly
Lissencephaly Network

Blog:
Malia Moore

Support Groups for Microgastria

Blog:
This Little Miggy Stayed Home

Support Groups for Nager syndrome

Facebook:
Nager Syndrome

Support Groups for Potocki-Shaffer syndrome

Facebook:
Potocki Shaffer Syndrome Family Page
Potocki Shaffer Syndrome Family Group

Support Groups for Rhizomelic Chondrodysplasia Puncta

Facebook:
RCDP/ Rhizomelic Chondrodysplasia Punctata

Support Groups for Semi-lobar holoprosencephaly

Facebook:
Our Olive Grace - Semi-Lobar Holoprosencephaly

Support Groups for Trisomy 9

Facebook:
Trisomy 9 Mosaic Families
Trisomy 9 Family
Trisomy 9p Families

Support Groups for VACTERL Association

Facebook:
VACTERL Association
VACTERL ASSOCIATION
VACTERL Association Support Group

Support Groups for Ventriculomegaly

Facebook:
Ventriculomegaly
Babies with ventriculomegaly

The Menkes Foundation

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

The Rare Disease Film Festival

Website: https://www.rarediseasefilmfestival.com/

Suggest a Resource

Find or submit local and national resources for this or other diagnoses.

Submit Resource

Pin It on Pinterest