Associations

There are many unknowns surrounding the diagnosis and treatment of adult-onset normal pressure hydrocephalus. However, NPH is not a hopeless condition. Advanced technology is continually introduced and developed. Adults diagnosed with normal pressure hydrocephalus, and their families, should be encouraged to ask questions, gather information and network with others.

Patient Associations

Hydrocephalus Association
4340 East West Highway Suite 905
Bethesda, MD 20814-4447
Phone: 301-202-3811
Toll-free: (888) 598-3789
Fax: 301-202-3813
Email:  webmaster@hydroassoc.org
Web:  www.hydroassoc.org

The Hydrocephalus Association is a member-supported nonprofit organization founded in 1983 to provide support, education and advocacy to individuals, families and professionals. Their goal is to provide comprehensive services to educate and empower individuals and families to seek out the best medical care, programs and resources to meet their needs now and in the future.

To receive a free information packet, which includes a Resource Guide on NPH, sample copies of their quarterly newsletter and a copy of About Normal Pressure Hydrocephalus - A Book for Adults and Their Families, please contact the Hydrocephalus Association office.

National Hydrocephalus Foundation
Debbi Fields, Executive Director
12413 Centralia Rd.
Lakewood, CA 90715-1653
Phone: 562-924-6666
Phone: 888-857-3434
Fax: 562-924-6666
Email: debbifields@nhfonline.org
Web: www.nhfonline.org

The objectives of NHF are:

  • To assemble and disseminate information pertaining to hydrocephalus, its treatments and outcomes
  • To establish and facilitate a communication network among affected families and individuals
  • To help others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family
  • To increase public awareness and knowledge of hydrocephalus
  • To promote and support research on the causes, treatment and prevention of hydrocephalus

In addition to providing the public with informational brochures, NHF offers a variety of help guides, maintains a reference library, videos/CD's on hydrocephalus, has support groups, will assist others in starting an NHF support group in their area, and publishes a quarterly newsletter, Life~Line.

Medical Associations

American Academy of Neurology
201 Chicago Avenue
Minneapolis, MN 55415
Phone: ((800) 879-1960
Fax: (612) 454-2746
Email: memberservices@aan.com
www.aan.org

The American Academy of Neurology publishes the monthly journal, Neurology, and provides fact sheets and brochures on various neurological disorders, including brain tumors, epilepsy, headache, and head injuries. Their brochure, Epilepsy: What You Should Know, includes useful information for patients who have epilepsy. They also have a section on their web site called Neurology News, which provides people with the latest information on neurologic disorders.

American Association of Neurological Surgeons (AANS)
5550 Meadowbrook Drive
Rolling Meadows, IL 60008-43852
Phone: (847) 378-0500 or 888 566-aans (2267)
Fax: (847) 378-0600
Email: info@aans.org
Web: www.neurosurgery.org or www.aans.org

DSUS/COD/1014/0194

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