Where to find support and assistance

Published August 15, 2003, issue of August 15, 2003.
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CANAVAN FOUNDATION

110 Riverside Dr., #4F

New York, NY 10024

(212) 873-4640

(877) 4-canavan

fax: (212) 873-7892

www.canavanfoundation.org

info@canavanfoundation.org

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

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 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

www.gaucherdisease.org

ngf@gaucherdisease.org

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

www.ulf.org

ulf@tbcnet.org

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

www.ntsad.org

info@ntsad.org

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

www.lotsf.org

lotsf@verizon.net

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

www.mpssociety.org

info@mpssociety.org

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

www.ndrf.org

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

www.familialdysautonomia.org

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

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 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

www.dystonia-foundation.org

dystonia@dystonia-foundation.org

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

www.dystonia-parkinsons.org

Bachmann.Strauss@mssm.edu

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

www.ml4.org

www@ml4.org

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

www.canavan.org

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

www.nfjgd.org

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

www.nnpdf.org

nnpd@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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