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.

Hydrocephalus Association

4340 East West Highway
Suite 905
Bethesda, MD 20814
Tel: 301-202-3811; 888-598-3789
Fax: 301-202-3813

Non-profit association that provides support, education, and advocacy programs for families and professionals and is the largest private funder of hydrocephalus research in the United States.

Hypersomnia Foundation

4514 Chamblee Dunwoody Road
Atlanta, GA 30338
Tel: 678-842-3512

The Hypersomnia Foundation strives to improve the lives of people with hypersomnia by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, a cure for these debilitating conditions.

Independent Living Research Utilization (ILRU)

TIRR Memorial hermann Research Hospital
1233 Moursund
Houston, TX 77030
Tel: 713-520-0232; 713-520-5136 (TTY)
Fax: 713-520-5785

National center for information, training, research, and technical assistance in independent living. Works to expand the body of knowledge on independent living and to promote utilization of results of research programs and demonstration projects.

International Campaign for Cures of SCI Paralysis

16415 Addison Road
Suite 550
Addison, TX 75001
Tel: 877-SCI-CURE
Fax: 972-248-7313

The ICCP is a coalition that consists of member organizations working in their collaborative mission "to expedite the discovery of cures for Spinal Cord Injury Paralysis". Members include the Christopher Reeve Foundation, PVA, the Kent Waldrep Foundation, the Miami Project, and others. In the financial year 2000 ICCP member groups funded more than 150 research projects worth over US $ 25 million. These projects were funded as a result of the diverse range of traditional fundraising initiatives and include Canadian Neurotrauma programs under the guidance of Rick Hansen Institute ($6 million approx).

International Campaign for Cures of SCI Paralysis (ICCP)

International Dyslexia Association

40 York Road
4th Floor
Baltimore, MD 21204
Tel: 410-296-0232;
Fax: 410-321-5069

Promotes effective teaching approaches and related clinical educational intervention strategies for people with dyslexia; supports and encourages interdisciplinary study and research; and facilitates exploration of the causes and early identification of dyslexia. Committed to the responsible and wide dissemination of research-based knowledge.

International Essential Tremor Foundation

P.O. Box 14005
Lenexa, KS 66285-4005
Tel: 913-341-3880; 888-387-3667
Fax: 913-341-1296

Provides educational information, funds research in tremor disorders, and offers services and support to individuals diagnosed with essential tremor, their families, and health care providers. Information and support includes a quarterly newsletter, support groups, and physician information and referrals.

International Research Foundation for RSD/CRPS

1910 East Busch Boulevard
Tampa, FL 33612
Tel: 813-907-2312
Fax: 813-830-7446

Not-for-profit organization dedicated to education and research on RSD/CRPS. Works to establish an international research network to help educate medical professionals and support research worldwide.

International Rett Syndrome Foundation

4600 Devitt Drive
Cincinnati, OH 45246
Tel: 513-874-1298; 800-818-7388

The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.

Intracranial Hypertension Research Foundation

6517 Buena Vista Drive
Vancouver, WA 98661
Tel: 360-693-4473
Fax: 360-694-7062

International non-profit that sponsors and funds medical research of idiopathic intracranial hypertension (old name pseudotumor cerebri) and secondary intracranial hypertension. IHRF's mission is to understand why IH happens, and find better treatments while ultimately seeking a cure. IHRF provides a support system, educational resources including patient conferences, and communication tools for patients. For physicians and scientists, IHRF sponsors educational training opportunities. IHRF operates in the IH Registry, a patient database for clinical research, at the Oregon Health & Science University. National 501(c)(3) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.