Where To Go for Support and Help

CANAVAN FOUNDATION

450 West End Avenue, #10C New York, NY 10024 (212) 873-4640 (877) 4-CANAVAN Fax: 212-873-7892 www.canavanfoundation.org info@canavanfoundation.org

This volunteer nonprofit foundation’s goals are to support research and to educate the medical community and at-risk populations.

FANCONI ANEMIA RESEARCH FUND

1801 Willamette Street, Suite 200 Eugene, OR 97401

(541) 687-4658 (800) 828-4891 Fax: 541-687-0548 www.fanconi.org info@fanconi.org

A family-driven fund that helps support research on this underdiagnosed blood disorder. It also supports an international network for education, support and help, and publishes newsletters.

NATIONAL GAUCHER FOUNDATION

5410 Edson Lane, Suite 260 Rockville, MD 20852 (800) 925-8885 Fax: (301) 816-1512 www.gaucherdisease.org ngf@gaucherdisease.org

This is a nonprofit organization supporting research and development for treatments and for a potential cure. Their many programs include a medical hotline, two care programs to help pay for treatments, education resources, symposia and local chapters.

UNITED LEUKODYSTROPHY FOUNDATION

2304 Highland Drive Sycamore, IL 60178 (800) 728-5483 Fax: (815) 895-2432 www.ulf.org office@ulf.org

A group that works to increase public awareness about leukodystrophy and other white-matter disorders as well as to provide support services to those with the disease and their families, such as information and assistance in finding sources of medical care, social services and referrals to genetic counseling facilities.

NATIONAL TAY-SACHS AND ALLIED DISEASES ASSOCIATION

2001 Beacon St., Suite 204 Brighton, MA 02135 (800) 906-8723 Fax: 617-277-0134 www.ntsad.org info@ntsad.org

A private, nonprofit voluntary health organization dedicated to the prevention and treatment of Tay-Sachs in all its forms as well as many other related genetic disorders. Programs include public and professional education, research, carrier screening, individual and family services, a peer support network, an international laboratory quality control program and advocacy.

THE NATIONAL MPS SOCIETY (MUCOLIPIDOSIS)

135 Broadway P.O. Box 736 Bangor, ME 04402 (207) 947-1445 Fax:(207) 990-3074 www.mpssociety.org info@mpssociety.org

A support group offering public education, fund raising for research and sponsorship of MPS conferences. Additionally, the society publishes a newsletter, a membership directory and Spanish-language brochures.

NATIONAL DYSAUTONOMIA RESEARCH FOUNDATION

P.O. Box 301 Red Wing, MN 55066 (651) 267-0525 Fax: (651) 267-0524 www.ndrf.org

A nonprofit foundation established to help those afflicted with any of the various forms of dysautonomia. It provides a support network for afflicted individuals and family members by offering information on the varied forms of the disease as well as by providing contacts to other organizations that may be of assistance.

DYSAUTONOMIA FOUNDATION

315 West 39th Street, Suite 701 New York, NY 10018 (212) 279-1066 Fax: 212-279-2066 www.familialdysautonomia.org info@familialdysautonomia.org

This is a nonprofit, voluntary organization founded in 1951 by parents of afflicted children. It is headquartered in New York City, with 14 chapters in the United States, Canada, Great Britain and Israel, and provides information on request.

FAMILIAL DYSAUTONOMIA HOPE

1170 Green Knolls Drive Buffalo Grove, IL 60089 (847) 913-0455 www.fdvillage.org info@fdhope.org

FD Hope is a nonprofit organization whose mission is to expand and accelerate scientific research that will find a cure for FD. Programs include grants for medical research, awareness and public education and, within the medical community, support for FD families, promotion of carrier screening and advocacy.

DYSTONIA MEDICAL RESEARCH FOUNDATION

1 East Wacker Drive, Suite 2430 Chicago, IL 60601 (312) 755-0198 (800) 361-8061 Fax: 312-803-0138 www.dystonia-foundation.org dystonia@dystonia-foundation.org

A foundation that seeks to advance research into the causes of and treatments for dystonia, build awareness in the medical and lay communities, as well as sponsor patient and family support groups and programs.

BACHMAN-STRAUSS DYSTONIA & PARKINSON FOUNDATION MOUNT SINAI MEDICAL CENTER

1 Gustave L. Levy Place Box 1490 New York, NY 10029 (212) 241-5614 Fax: (212) 987-0662 www.dystonia-parkinsons.org Bachmann.Strauss@mssm.edu

A foundation that funds scientific research to find better treatments and cures for the movement disorders dystonia and Parkinson’s disease. It also provides medical and patient education.

ML4 FOUNDATION (MUCOLIPIDOSIS IV)

719 East 17th Street Brooklyn, NY 11230 (718) 434-5067 www.ml4.org www@ml4.org

A nonprofit organization for parents and professionals committed to raising funds for ML4 research. The foundation also provides a support network for parents and siblings of affected children.

THE CANAVAN RESEARCH FOUNDATION

Fairwood Professional Building New Fairfield, CT 06812 (203) 746-2436 Fax: (203) 746-3205 www.canavan.org canavanresearch@aol.com

A nonprofit organization founded by the parents of afflicted children, the Canavan Research Foundation is devoted to funding research directed toward the cure and treatment of Canavan and other childhood genetic brain diseases.

CENTER FOR JEWISH GENETIC DISEASES

Mount Sinai School of Medicine 1 Gustave L. Levy Place, Box 1497

New York, NY 10029 (212) 659-6774 (Main) (212) 241-6947 (Consultation/Screening) www.nfjgd.org

The world’s first center devoted to the study of diseases predominant among Ashkenazic Jews. The center’s mission is to improve the diagnosis and treatment, as well as the counseling of patients and their families suffering from Jewish genetic diseases, and to conduct intensive research to combat these diseases.

NATIONAL NIEMANN-PICK FOUNDATION

415 Madison Ave. P.O. Box 49

Ft. Atkinson, WI 53538 (877) 287-3672 (920) 563-0930 Fax: (920) 563-0931 www.nnpdf.org nnpdf @idcnet.com

An international, voluntary, nonprofit organization made up of parents and medical and educational professionals. It promotes research, provides medical and educational information to assist in diagnosis, and offers families referrals, support and genetic counseling.

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Where To Go for Support and Help

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