Resources for Genetic Diseases
Genetic Disease Support Groups
A
Alex, The Leukodystrophy Charity
https://www.alextlc.org
AliveAndKickn
https://www.aliveandkickn.org
Alzheimer’s Association
https://www.alz.org
Alzheimer’s Foundation of America
https://www.alzfdn.org
American Association of Kidney Patients
https://www.aakp.org
American Cancer Society
https://www.cancer.org
American Heart Association
https://www.heart.org
American Lung Association
https://www.lung.org
American Parkinson Disease Association
https://www.apdaparkinson.org
American Sickle Cell Anemia Association
http://www.ascaa.org
Amyloidosis Support Groups, Inc.
https://www.amyloidosissupport.org
Association for Children with Down Syndrome, Inc.
https://www.acds.org
B
BRCAStrong
https://www.brcastrong.org
Basser Research Center for BRCA
https://www.basser.org
Boomer Esiason Foundation
https://www.esiason.org
Breastcancer.org
https://www.breastcancer.org
Bright Pink
https://www.brightpink.org
Brugada Foundation
https://www.brugada.org/en
CCare Lynch Syndrome
https://www.fightlynch.org
CHDI Foundation
https://www.chdifoundation.org
CP Now
https://www.cpnowfoundation.org
Canavan Foundation, Inc.
http://www.canavanfoundation.org
Cardiomyopathy Association
https://www.cardiomyopathy.org
Charcot-Marie-Tooth Association
https://www.cmtausa.org
Check Your Genes
https://www.checkyourgenes.org
Children’s Cardiomyopathy Foundation
https://www.childrenscardiomyopathy.org
Children’s PKU Network
http://www.pkunetwork.org
Children’s Sickle Cell Foundation, Inc.
http://www.cscfkids.org
Coalition Duchenne
http://www.coalitionduchenne.org
Collaborative Group of the Americas in Inherited Colorectal Cancer
https://www.cgaigc.com
Colon Cancer Alliance
https://www.ccalliance.org
Cooleys Anemia Foundation, Inc.
https://www.thalassemia.org
Cure CMD
https://www.curecmd.org
Cure Duchenne
https://www.cureduchenne.org
Cystic Fibrosis Foundation
https://www.cff.org
Cystic Fibrosis Research, Inc.
https://www.cfri.org
D
DCM Foundation
https://www.dcmfoundation.org
Down Syndrome Diagnosis Network
https://www.dsdiagnosisnetwork.org
Down Syndrome Resource Foundation
https://www.dsrf.org
F
FORCE: Facing Our Risk of Cancer Empowered
https://www.facingourrisk.org
FRAXA Research Foundation
https://www.fraxa.org
Familial Hypercholesterolemia (FH) Foundation
https://www.thefhfoundation.org
Fight Colorectal Cancer
https://www.fightcolorectalcancer.org
Foundation to Eradicate Duchenne
https://www.duchennemd.org
G
Genetic Alliance
https://www.geneticalliance.org
H
HIS Breast Cancer Awareness
https://www.hisbreastcancer.org
Heart Failure Society of America
https://www.hfsa.org
Heart Rhythm Society
https://www.hrsonline.org
Hemophilia Federation of America
https://www.hemophiliafed.org
Hereditary Colon Cancer Foundation
https://www.hcctakesguts.org
Hereditary Diffuse Gastric Cancer Advocacy
https://www.hereditarydiffusegastriccancer.org
Hereditary Disease Foundation
https://www.hdfoundation.org
Histiocytosis Association
https://www.histio.org
Huntington’s Disease Society of America
https://www.hdsa.org
Huntington’s Disease Youth Organization
https://en.hdyo.org
Hypertrophic Cardiomyopathy Association
https://www.4hcm.org
J
J Screen
https://www.jscreen.org
Jewish Genetic Disease Consortium
https://www.jewishgeneticdiseases.org
K
Kids with Heart National Association for Children’s Heart Disorders
https://www.kidswithheart.org
L
Lynch Syndrome International
https://www.lynchcancers.com
M
MHE and Me
https://www.mheandme.com
March of Dimes Foundation
https://www.marchofdimes.org
Michael J. Fox Foundation for Parkinson’s Research
https://www.michaeljfox.org
Muscular Dystrophy Family Foundation
https://www.mdff.org
O
Ovarian Cancer Research Alliance
https://www.ocrahope.org
P
PKD Foundation
https://www.pkdcure.org
Parkinson’s Foundation
https://www.parkinson.org
S
SADS (Sudden Arrhythmia Death Syndrome) Foundation
https://www.sads.org
Sharsheret
https://www.sharsheret.org
Sickle Cell Disease Association of America, Inc.
https://www.sicklecelldisease.org
Sickle Cell Society
https://www.sicklecellsociety.org
Sickle Cell/Thalassemia Patients Network
http://www.sctpn.net
Spinal Muscular Atrophy Foundation
https://www.smafoundation.org
T
The Children’s Heart Foundation
https://www.childrensheartfoundation.org
The Marfan Foundation
https://www.marfan.org
The Susan G. Komen Breast Cancer Foundation
https://ww5.komen.org
Think Genetic
https://www.thinkgenetic.com
Trisomy 18 Foundation
https://www.trisomy18.org
W
William E. Proudford Sickle Cell Fund, Inc.
https://wepsicklecell.org
N
National Down Syndrome Society
https://www.ndss.org
National Fragile X Foundation
https://www.fragilex.org
National Hemophilia Foundation
https://www.hemophilia.org
National Organization for Rare Disorders (NORD)
https://www.rarediseases.org
National Ovarian Cancer Coalition
https://www.ovarian.org
National PKU Alliance
https://www.npkua.org
National Society of Genetic Counselors
https://www.nsgc.org
National Tay-Sachs & Allied Diseases Association, Inc.
https://www.ntsad.org
No Stomach for Cancer
https://www.nostomachforcancer.org
Norton & Elaine Sarnoff Center for Jewish Genetics
https://www.juf.org/cjg
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