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.


Partnership for Prescription Assistance

1100 15th Street, NW
Washington, DC 20005

Works to increase awareness of and enrollment in patient assistance programs. Sponsors a toll-free helpline and serves as a single point of access to nearly 500 prescription assistance programs.


Pathways.org

150 N. Michigan Avenue
Suite 2100
Chicago, IL 60601
Tel: 800-955-CHILD (2445)
Fax: 312-893-6621

National non-profit organization trusted to assure the best for all babies' physical development by raising awareness about the gift of early detection, the promise of early therapy, and the benefits of tummy time. Trusted to assure the best for all babies physical development.


Patient Advocate Foundation

421 Butler Farm Road
Hampton, VA 23666
Tel: 800-532-5274
Fax: 757-873-8999

National non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.


Patient Recruitment and Public Liaison Office

National Institutes of Health, DHHS
Bldg. 61, #10 Cloister Court
Bethesda, MD 20892-4754
Tel: 800-411-1222; 866-411-1010 (TTY)


Pediatric Brain Foundation (formerly Children's Neurobiological Solutions)

2144 E. Republic Road
Building B, Suite 202
Springfield, MO 65804
Tel: (417)887-4242

Facilitates science for and educates parents of children with neurological conditions, as well as educating public officials on the critical importance of funding pediatric neurological research


Pediatric Brain Tumor Foundation

302 Ridgefield Court
Asheville, NC 28806
Tel: 800-253-6530
Fax: 828-665-6894

The world’s largest non-governmental funder of childhood brain tumor research. Also offers free educational information, Internet conferences, college scholarships, and other support.


Pediatric Hydrocephalus Foundation

10 Main Street, Suite 235
Woodbridge, NJ 07095
Tel: 732-634-1283

National all-volunteer organization dedicated to funding a cure for hydrocephalus, educating and raising awareness about the condition and offering support to the hydrocephalus community.


Pediatric Neurotransmitter Disease Association

P.O. Box 180622
28 Prescott
Old Bethpage, NY 11804
Fax: same

Dedicated to helping the children and families who are affected by a pediatric neurotransmitter diseases through education, advocacy, and research. Diseases presently represented include Tyrosine Hydroxylase Deficiency, Aromatic L Amino Acid Decarboxylase Deficiency, GTP I Cyclohydrolase I Deficiency, and Succinic Semialdehyde Dehydrogenase Dificiency.


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

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