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.

People Against Childhood Epilepsy (PACE)

7 East 85th Street
Suite A3
New York, NY 10028
Tel: 212-665-PACE (7223)
Fax: 212-327-3075

[In 2011 Susan and Scott Fahey announced that " PACE will close its doors."] The Nonprofit was established as a research resource providing information and support to families of children with epilepsy.

Phelan-McDermid Syndrome Foundation

200 Capri Isles Boulevard, Suite 7F
Venice, FL 34292
Tel: 941-485-8000

Pituitary Network Association

P.O. Box 1958
Thousand Oaks, CA 91358
Tel: 805-499-9973
Fax: 805-480-0633

International non-profit organization for patients with pituitary disorders, their families, loved ones, and the physicians and health care providers who treat them.

PMD Foundation (Pelizaeus-Merzbacher disease)

P.O. Box 898
Salado, TX 76751
Tel: 214-313-9107

Tax-exempt, nonprofit organization that serves families, researchers, and others affected by Pelizaeus-Merzbacher disease by supporting education, research, services, and advocacy programs.

Post-Polio Health International

4207 Lindell Blvd.
St. Louis, MO 63108-2930
Tel: 314-534-0475
Fax: 314-534-5070

Works to enhance the lives and independence of polio survivors and ventilator users through education, advocacy, research, and networking programs.

Prader-Willi Syndrome Association

8588 Potter Park Drive
Suite 500
Sarasota, FL 34238
Tel: 800-926-4797
Fax: 941-312-0142

Serves as an international vehicle of communication about Prader-Willi syndrome (PWS), a genetically based developmental disability. Provides to parents and professionals a national and international network of information, support services, and research endeavors to meet the needs of affected children and adults and their families.

Preuss Foundation, Inc.[For Brain Tumor Research]

2223 Avenida de la Playa
Suite 220
La Jolla, CA 92037
Tel: 858-454-0200
Fax: 858-454-4449

Provides forums for basic brain tumor researchers in an effort to increase communication and collaboration among them.

Project ALS

801 Riverside Drive, Suite 6G
Suite 420
New York, NY 10032
Tel: 212-420-7382; 855-900-2257
Fax: 212-420-7387

Not-for-profit organization that raises awareness and significant funds toward effective treatments and a cure for ALS, also known as Lou Gehrig’s disease.

Pseudotumor Cerebri Support Network

8247 Riverside Drive
Powell, OH 43065

Non-profit organization that offers information and resources about PTC to people with the disorder.

Purine Research Society

5424 Beech Avenue
Bethesda, MD 20814-1730
Tel: 301-530-0354
Fax: 301-564-1180.

National nonprofit organization that supports DNA research and the search for mutations in nuclear and mitochondrial DNA that might cause autistic symptoms or autistic/epileptic symptoms in patients. Offers publications and reference information, including a purine-restricted diet.