Where to find support and assistance
CANAVAN FOUNDATION
110 Riverside Dr., #4F
New York, NY 10024
(212) 873-4640
(877) 4-canavan
fax: (212) 873-7892
A volunteer, nonprofit foundation, whose goals are to support research and to educate the medical community and at-risk populations.
FANCONI ANEMIA RESEARCH FUND
1801 Willamette St., Suite 200
Eugene, OR 97401
(541) 687-4658
(800) 828-4891
fax: (541) 687-0548
A family-driven fund that helps support research on this underdiagnosed blood disorder. It also supports an international network for support, education and help, and publishes four newsletters.
NATIONAL GAUCHER FOUNDATION
5410 Edison Ln., Suite 260
Rockville, MD 20852
(301) 816-1515
(800) 428-2437
fax: (301) 816-1516
A nonprofit organization that supports research and development for treatments and a potential cure. Among the many programs: a medical hotline, two care programs to help pay for treatments, education resources, symposia and local chapters.
UNITED LEUKODYSTROPHY FOUNDATION
2304 Highland Dr.
Sycamore, IL 60178
(800) 728-5483
fax: (815) 895-2432
A group that works to increase public awareness about leukodystrophy and other white-matter disorders as well as 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 genetic counseling.
NATIONAL TAY-SACHS AND ALLIED DISEASES ASSOCIATION
2001 Beacon St., Suite 204
Brighton, MA 02135
(617) 277-4463
(800) 906-8723
fax: (617) 277-0134
A private, nonprofit voluntary health organization dedicated to the prevention and eradication of Tay-Sachs and many other related genetic disorders. Programs include public and professional education, carrier screening, family services, a parent-peer group-support network, international laboratory quality control, advocacy and research.
LATE ONSET TAY SACHS FOUNDATION
1303 Paper Mill Rd.
Erdenheim, PA 19038
(215) 836-9426
(800) 672-2022
fax: (215) 836-5438
Services include support for members, a bimonthly newsletter, an annual conference, a speaker’s bureau and education of health professionals and the medical community. The Late Onset Tay-Sachs Foundation is also involved in raising money for research.
NATIONAL MPS SOCIETY (MUCLOLIPIDOSIS)
45 Packard Dr.
Bangor, ME 04401
(207) 947-1445
Fax: (207) 990-3074
A support group, public education center and research fundraising organization. Publishes a newsletter, a membership directory and Spanish-language brochures. Also sponsors conferences.
NATIONAL DYSAUTONOMIA RESEARCH FOUNDATION
1407 W. Fourth St. Suite 160
Red Wing, MN 55066
(651) 267-0525
Fax: (651) 267-0524
National Dysautonomia Research Foundation is a nonprofit foundation, established to help those who are afflicted with any of the various forms of dysautonomia. It provides a support network for afflicted individuals and family members by providing information on the various forms of dysautonomia, as well as providing contacts to other organizations that may be of assistance.
DYSAUTONOMIA FOUNDATION
633 Third Ave., 12th floor
New York, NY 10017
(212) 949-6644
Fax: (212) 682-7625
This is a nonprofit, voluntary organization founded in 1951 by parents of afflicted children. It is headquartered in New York, with 16 chapters in the United States, Canada, Great Britain and Israel, and provides information upon request.
FAMILIAL DYSAUTONOMIA HOPE
605 5th Ave.
Conover, NC 28613
(828) 695-1060
Fax: (828) 695-1060
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 education for the public and within the medical community; support for FD families promotion of carrier screening, and advocacy.
DYSTONIA MEDICAL RESEARCH FOUNDATION
1 East Wacker Dr., Suite 2430
Chicago, Il 60601
(312) 755-0198
fax: (312) 803-0138
The goals of this foundation are to advance research into the causes of and treatments for dystonia, build awareness in the medical and lay communities, and sponsor patient and family support groups and programs.
BACHMAN-STRAUSS DYSTONIA & PARKINSON FOUNDATION
Mount Sinai Medical Center
1 Gustave L. Levy Pl.
Box 1490
New York, NY 10029
(212) 241-5614
This foundation was established to provide support, research and treatment; promote medical and patient education, and sustain local and regional support groups for patients and caregivers confronting dystonia and other movement disorders.
ML4 FOUNDATION
719 East 17th St.
Brooklyn, NY 11230
(718) 434-5067
Fax: (718) 859-7371
This foundation is a nonprofit organization for parents and professionals committed to raising funds for ML 4 research. It also provides a support network for parents and siblings of affected children.
CANAVAN RESEARCH FOUNDATION
Fairwood Professional Building
Route 37
New Fairfield, CT 06812
(203) 746-2436
fax: (203) 746-3205
Roger and Helene Karlin and Mark and Eillen Mushin, parents of Canavan patients Lindsay and Alyssa, set up this nonprofit foundation, which 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 Pl.
Box 1497
New York, NY 10029
(212) 659-6774
This center is the first center in the world devoted to the study of diseases that affect Ashkenazi Jews. The center’s mission is to improve the diagnosis, treatment and counseling of patients and their families suffering from Jewish genetic diseases and to conduct intensive research to combat these inherited diseases.
NATIONAL NIEMANN-PICK FOUNDATION
P.O. Box 49
415 Madison Ave.
Ft. Atkinson, WI 53538
(920) 563-0930
Fax: (920) 563-0931
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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