Support Groups

Genetics & Genetic Diseases: Support Groups

The following organizations are support groups for individuals and family members of individuals with Genetic Disorders. For more information, please contact the appropriate organizations listed below. Links to other web sites do not constitute an endorsement or referral. This information is to be used for educational and informational purposes only. Medical information on the Chicago Center for Jewish Genetic Disorders’ Website, if any, does not represent advice regarding medical diagnosis or treatment, referrals to health care professionals, endorsements of health care products or any other recommendations. For medical information, please consult your doctor.

Brain Talk Communities
Neurology Support Groups
Department of Neurology
Massachusetts General Hospital
Includes Canavan, Dystonia, Glycogen Storage
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi

Genetic Alliance
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2304
Phone: (202) 966-5557
Helpline: (800) 336-GENE (4363)
Fax: (202) 966-8553
Email: info@geneticalliance.org
http://www.geneticalliance.org

Family Village: A Global Community of Disability-Related Resources
Waisman Center
University of Wisconsin-Madison
1500 Highland Avenue
Madison, WI 53705-2280
Email: familyvillage@waisman.wisc.edu
http://www.familyvillage.wisc.edu/

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: (203) 744-0100
Fax: (203) 798-2291
Toll Free: (800) 999 -6673 (voicemail only)
www.rarediseases.org
Organizational Database
Find a support group or other source of help.

MoSt GeNe: Mountain States Genetics Network
Directory of Online Genetic Support Groups
http://www.mostgene.org/support/index.html

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone: (914) 428-7100
Toll Free: (888) 663-4637
Email: resourcecenter@modimes.org
http://www.modimes.org

The Mazor Guide to Jewish Genetic Diseases
A Resource for Information and Support Organizations
http://www.mazornet.com/genetics/

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
Phone: (920) 336-5333
Toll Free: (877) 336-5333 parents only
Fax: (920) 339-0995
Contact: Julie Gordon
Email: mums@netnet.net
www.netnet.net/mums/
MUMS National Parent-to-Parent Network is a support organization for families or care providers of children with rare disorders or medical conditions and also for service providers who assist these families. Parents or care providers are matched or sent a list of other parents whose children have the same or similar diagnosis.

Office of Rare Diseases
National Institutes of Health
Bethesda, Maryland 20892
http://rarediseases.info.nih.gov/

University of Kansas Medical Center
Department of Medical Genetics
Genetic and Rare Conditions Site
http://www.kumc.edu/gec/support/

Disease Specific Support Groups

Beta-Thalassemia

Cooley’s Anemia Foundation
129-09 26th Avenue – #203
Flushing, NY 11354
Phone: (800) 522-7222 or
(718) 321-CURE (2873)
Fax: (718) 321-3340
Email: info@cooleysanemia.org
http://www.thalassemia.org/

Bloom Syndrome

Bloom’s Syndrome Registry
c/o Laboratory of Human Genetics
The New York Blood Center
310 East 67th Street
New York, NY 10021
Contact: James L. German, III, MD
Phone: (212) 570-3075
Fax: (212) 570-3195

Cystic Fibrosis

Cystic Fibrosis Information by Norma Plourde
http://www3.nbnet.nb.ca/normap/CF.htm

Cystic-L Cystic Fibrosis Info & Support
http://www.cystic-l.org/

Cystic Fibrosis by the Yourman family
Site created by family of young girl with CF
http://www.yourphotoservice.com/cf/cystic_a.htm
http://www.yourphotoservice.com/cf/webdoc1.htm

Cystic Fibrosis Foundation
http://www.cff.org

 

Familial Dysautonomia

Family Village – University of Wisconsin
http://www.familyvillage.wisc.edu/lib_dysa.htm
FD-NETFor Familial Dysautonomia families to chat with others.
To subscribe, send a message to:
listserver@relay.doit.wisc.edu
In the body of the message type:
SUBSCRIBE FD-NET YOUR NAME

NDRF National Dysautonomia Research Foundation
http://www.ndrf.org/familial.htm
http://www.ndrf.org/othersupport.htm

 

Familial Mediterranean Fever

fmf_support
Yahoo Group – Familial Mediterranean Fever
http://groups.yahoo.com/group/fmf_support/

Fanconi’s Anemia

Fanconi’s Anemia International Registry
c/o Arleen Auerbach, PhD
Laboratory for Investigative Dermatology
The Rockefeller University
1230 York Avenue
New York, NY 10021-6399
Phone: (212) 327-8862

Glycogen Storage Disorder Type III

GSDnet
An electronic mailing list intended to allow communication between families, individuals, and professionals with an interest in glycogen storage disease.
To subscribe to GSDnet, send this message:
subscribe gsdnet your name
to this address: listserv@maelstrom.stjohns.edu
Leave the subject line blank.

Association for Glycogen Storage Disease (UK)
Newsletter and Email List
http://www.agsd.org.uk/scripts/newsletter.asp
http://www.agsd.org.uk/scripts/join.asp

 

Mucolipidosis IV

Mucolipidosis IV Foundation
ML4orum
http://ml4.org/connect.html

Niemann-Pick Disease

National Niemann-Pick Disease Foundation
Offers three email lists hosted by Yahoo
http://www.nnpdf.org/maillist.htm
or http://www.nnpdf.org/

Tay-Sachs Disease

Late-Onset Tay-Sachs Foundation (LOTSF)
http://www.lotsf.org/

National Tay-Sachs & Allied Diseases Association (NTSAD)
http://www.ntsad.org/

National Tay-Sachs & Allied Diseases Association of Delaware Valley
http://www.tay-sachs.org/

 

Torsion Dystonia

Dystonia Medical Research Foundation
One E Wacker Drive, Suite 2430
Chicago, IL USA 60601-1905
Phone: (312) 755-0198
Toll Free: (800) 377-DYST
Fax: (312) 803-0138
http://www.dystonia-foundation.org
Email: dystonia@dystonia-foundation.org

Family Village-Dystonia
http://www.familyvillage.wisc.edu/lib_dyst.htm

International Dystonia On-Line Support Group
http://www.dystonia-support.org/

 

Cancer & Cancer Genetics: Support Groups

The following organizations are support groups for individuals and family members of individuals with cancer. For more information, please contact the appropriate organizations listed below. The inclusion of any resource or link on Chicago Center for Jewish Genetic Disorders’ Website does not imply endorsement. Resources are provided for educational purposes only. Consult your doctor for information about Cancer.

American Cancer Society
http://www.cancer.org/

Cancer.gov
National Cancer Institute/National Institutes of Health
http://www.nci.nih.gov/

 

Breast Cancer

FORCE: Facing Our Risk of Cancer Empowered
For women and family members at risk for or with BRCA mutations
http://www.facingourrisk.org/

National Alliance for Breast Cancer Organizations
http://www.nabco.org/

BreastCancerInfo.com
Susan G. Komen Breast Cancer Foundation
http://www.komen.org/bci/

Sharsheret
For young Jewish women
http://www.sharsheret.org

Y-Me National Breast Cancer Organization
http://www.y-me.org

Colon Cancer

Colon Cancer Alliance, Inc.
175 Ninth Avenue
New York, NY 10011
Phone: 212-627-7451 (office)
Helpline: 1-877-422-2030
Fax: 425-940-6147
http://www.ccalliance.org/connect/support.html

This page last updated on January 10, 2003.