Information / Resources

 Home / Information / Resources

Here are a number of resources offering a wealth of information for patients, their families and health professionals alike.

 

AVMs

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
http://www.rarediseases.org
Tel: 203-744-0100
Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

 

Stroke

American Stroke Association: A Division of American Heart Association
7272 Greenville Avenue
Dallas, TX   75231-4596
http://www.strokeassociation.org
Tel: 1-888-4STROKE (478-7653)
Fax: 214-706-5231
Offers a wide array of programs, products, and services, from patient education materials to scientific statements with cutting-edge information for healthcare professionals.

 

Brain Attack Coalition
31 Center Drive
Room 8A07
Bethesda, MD   20892-2540
http://www.stroke-site.org
Tel: 301-496-5751
Fax: 301-402-2186
The Brain Attack Coalition is a group of professional, voluntary and governmental entities dedicated to reducing the occurrence, disabilities and death associated with stroke. The goal of the Coalition is to strengthen and promote the relationships among its member organizations in order to help people who have had a stroke or are at risk for a stroke.

 

Stroke Clubs International
805 12th Street
Galveston, TX   77550
strokeclubs@earthlink.net
Tel: 409-762-1022
Offers mutual support, education, social and recreational programs and activities to people who have experienced strokes, their families, and friends.

 

Children's Hemiplegia and Stroke Assocn. (CHASA)
4101 West Green Oaks Blvd., Ste. 305
PMB 149
Arlington, TX   76016
http://www.hemi-kids.org
Tel: 817-492-4325
Nonprofit organization that offers support and information to families of children who have hemiplegia due to stroke or other causes. Sponsors a number of programs for families, offers support groups and information about research studies, and sponsors conferences and a childhood stroke awareness campaign.

 

Heart Rhythm Foundation
1400 K Street, NW
Suite 500
Washington, DC   20005
http://www.heartrhythmfoundation.org
Tel: 202-464-3404
Fax: 202-464-3405
Nonprofit organization dedicated to reducing death and disability due to heart rhythm disorders, such as atrial fibrillation.

 

Aneurysms
Brain Aneurysm Foundation

269 Hanover Street, Building 3
Hanover, MA   02339
http://www.bafound.org
Tel: 781-826-5556 888-BRAIN02 (272-4602)

 

American Association of Neurological Surgeons
5550 Meadowbrook Drive
Rolling Meadows, IL   60008-3852
http://www.aans.org
Tel: 847-378-0500/888-566-AANS (2267)
Fax: 847-378-0600

 

Brain and Spinal Tumors
American Brain Tumor Association (ABTA)
2720 River Road
Suite 146
Des Plaines, IL   60018-4117
http://www.abta.org
Tel: 847-827-9910 800-886-2282
Fax: 847-827-9918

 

Childhood Brain Tumor Foundation
20312 Watkins Meadow Drive
Germantown, MD   20876
http://www.childhoodbraintumor.org
Tel: 877-217-4166 301-515-2900

 

Katie's Kids for the Cure/ National Fund for Pediatric Brain Tumor Research
3741 Walnut Street
Box 612
Philadelphia, PA   19104
http://www.katieskids.org
Tel: 877-KTS-KIDS (587-5437) 610-831-9026
Fax: 215-689-1454

 

National Cancer Institute (NCI)
National Institutes of Health, DHHS
6116 Executive Boulevard, Ste. 3036A, MSC 8322
Bethesda, MD   20892-8322
http://cancer.gov
Tel: 800-4-CANCER (422-6237) 800-332-8615 (TTY)

 

American Cancer Society
National Home Office
250 Williams Street, NW
Atlanta, GA   30303-1002
http://www.cancer.org
Tel: 800-ACS-2345 (227-2345)

 

American Council for Headache Education
19 Mantua Road
Mt. Royal, NJ   08061
http://www.achenet.org
Tel: 856-423-0258 800-255-ACHE (255-2243)
Fax: 856-423-0082

 

International RadioSurgery Association
3002 N. Second Street
Harrisburg, PA   17110
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809

 

Brain Aneurysm Foundation
269 Hanover Street, Building 3
Hanover, MA   02339
http://www.bafound.org
Tel: 781-826-5556 888-BRAIN02 (272-4602)
Provides support networks and educational resources to raise public awareness regarding early detection and treatment of brain aneurysms. Information is also available for caregivers.

 

National Stroke Association
9707 East Easter Lane
Suite B
Centennial, CO   80112-3747
http://www.stroke.org
Tel: 303-649-9299 800-STROKES (787-6537)
Fax: 303-649-1328
National non-profit organization that offers education, services and community-based activities in prevention, treatment, rehabilitation and recovery. Serves the public and professional communities, people at risk, patients and their health care providers, stroke survivors, and their families and caregivers.

 

National Aphasia Association
350 Seventh Ave.
Suite 902
New York, NY   10001
http://www.aphasia.org
Tel: 212-267-2814 800-922-4NAA (4622)
Fax: 212-267-2812
Promotes the care, welfare, and rehabilitation of people with aphasia through public education and support of research. Offers printed materials, a toll-free information hotline, a newsletter, and a listing of support groups.

 

Hazel K. Goddess Fund for Stroke Research in Women
785 Park Avenue
New York, NY   10021-3552
http://www.thegoddessfund.org
Tel: 212-713-6789
Fax: 212-698-5629
Non-profit organization that focuses on critical issues specific to stroke in women, including research, prevention, treatment, education, and advocacy.

 

American Health Assistance Foundation
22512 Gateway Center Drive
Clarksburg, MD   20871
http://www.ahaf.org
Tel: 301-948-3244 800-437-AHAF (2423)
Fax: 301-258-9454
Non-profit charitable organization dedicated to funding research and educating the public on Alzheimer's disease, glaucoma, macular degeneration, heart disease, and stroke. Provides emergency financial assistance to Alzheimer's disease patients and their caregivers.

 

American Stroke Association: A Division of American Heart Association
7272 Greenville Avenue
Dallas, TX   75231-4596
http://www.strokeassociation.org
Tel: 1-888-4STROKE (478-7653)
Fax: 214-706-5231

 

Brain Tumor Society
124 Watertown Street
Suite 3H
Watertown, MA   02472-2500
http://www.tbts.org
Tel: 617-924-9997 800-770-TBTS (8287)
Fax: 617-924-9998

 

Children's Brain Tumor Foundation
274 Madison Avenue
Suite 1004
New York, NY   10016
http://www.cbtf.org
Tel: 212-448-9494 866-CBT-HOPE (228-4673)
Fax: 212-448-1022

 

National Brain Tumor Foundation (NBTF)
22 Battery Street
Suite 612
San Francisco, CA   94111-5520
http://www.braintumor.org
Tel: 415-834-9970 800-934-CURE (2873)
Fax: 415-834-9980

 

Musella Foundation for Brain Tumor Research and Information
1100 Peninsula Blvd.
Hewlett, NY   11557
http://www.virtualtrials.com
Tel: 516-295-4740 888-295-4740
Fax: 516-295-2870
 

National Headache Foundation
820 N. Orleans
Suite 217
Chicago, IL   60610-3132
http://www.headaches.org
Tel: 312-274-2650 888-NHF-5552 (643-5552)
Fax: 312-640-9049

 

International RadioSurgery Association
3002 N. Second Street
Harrisburg, PA   1711
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809