Patient Organizations

Patient Organizations

This listing is not intended to be a comprehensive listing of all not-for-profit health agencies in the United States, nor does inclusion of any particular organization imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information useful to individuals nationally, and for this reason we have not included many local groups that offer valuable assistance to patients and their families within a limited geographic area. Many of the organizations listed in this directory have information available to the public on the World Wide Web.

Compassionate Friends

1000 Jorie Boulevard
Suite 140
Oak Brook, IL 60522-3696
Tel: 877-969-0010
Fax: 630-990-0246

National, independent, nonprofit, self-help support organization offering friendship and understanding to families grieving the death of a child of any age, from any cause. There are no membership fees or dues, and parents, grandparents, and adult siblings are welcome.

Creutzfeldt-Jakob Disease (CJD) Foundation Inc.

3610 W. Market Street, Suite 110
Akron, OH 44333
Tel: 800-659-1991
Fax: 234-466-7077

Non-profit, volunteer foundation that promotes research, education, and awareness of CJD and reaches out to people affected by CJD.

Cure CMD

19401 S. Vermont Avenue, Suite J100
Torrance, CA 90502
Tel: 424-265-0874

Cure CMD’s mission is to bring research, treatments and in the future, a cure for Congenital Muscular Dystrophies. Cure CMD will achieve this mission by working globally together with dedicated parent, government and research advocates. By focusing on this mission, Cure CMD will find and fund high potential research and clinical trials. Success will be determined by clinical applications that improve the lives of those afflicted with CMD’s.

Cure SMA

925 Busse Road
Elk Grove Village, IL 60007
Tel: 800-886-1762
Fax: 847-367-7623

International non-profit foundation dedicated to accelerating the development of a treatment or cure for SMA through the funding of research, drug discovery programs, and clinical trials. Assists families through informational programs and support services; sponsors an equipment pool; and educates the public and the medical community about SMA.


10 Schalks Crossing Road
Suite 501A-133
Plainsboro, NJ 08536
Tel: 307-215-9840

The mission of CureCADASIL is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We are dedicated to helping patients, families, caregivers, and other supporters touched by CADASIL.


1216 Broadway, 2nd Floor
New York City, NY 10001
Tel: 347-294-2873; 800-457-4777
Fax: 410-785-7009

CurePSP is the leading source of information and support for patients and their families, other caregivers, researchers and healthcare professionals on prime of life neurodegeneration including PSP, CBD and related diseases. A nonprofit voluntary health organization whose mission is to increase awareness of progressive supranuclear palsy, corticobasal degeneration and related brain diseases (including atypical parkinsonisms); fund research toward cure and prevention; educate healthcare professionals; and provide support, information and hope for affected persons and their families.

Cushing's Support and Research Foundation

60 Robbins, #12
Plymouth, MA 02360
Tel: 617-723-3674
Fax: same as phone

Provides information and support for Cushing's Disease and Cushing's Syndrome patients and their families and works to increase awareness and educate the public.

Cyclic Vomiting Syndrome Association

P.O. Box 270341
Milwaukee, WI 53227
Tel: 414-342-7880
Fax: 414-342-8980

International network for patients, family members, and professionals that offers support, networking, and education for patients, families, and professionals affected by CVS and abdominal migraine. Promotes, facilitates, and funds medical research about CVS.

Dana Foundation

505 Fifth Avenue
6th Floor
New York, NY 10017
Tel: 212-223-4040
Fax: 212-593-7623

Supports brain research through grants, educates the public about the successes and potential of brain research, and produces free publications.

Dandy-Walker Alliance, Inc.

10325 Kensington Pkwy.
Suite 384
Kensington, MD 20895
Tel: 877-326-3992

Nonprofit organization committed to educational and informational activities, programs and publications, and supporting non-partisan research and events to increase public awareness for Dandy-Walker. Supports all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker.