Dysautonomia refers to a disorder of autonomic nervous system (ANS) function. Most physicians view dysautonomia in terms of failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive ANS activities also can occur. Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia. Dysautonomia also can occur as a primary condition or in association with degenerative neurological diseases such as Parkinson's disease. Other diseases with generalized, primary dysautonomia include multiple system atrophy and familial dysautonomia. Hallmarks of generalized dysautonomia due to sympathetic failure are impotence (in men) and a fall in blood pressure during standing (orthostatic hypotension). Excessive sympathetic activity can present as hypertension or a rapid pulse rate. There is no cure for dysautonomia. Secondary forms may improve with treatment of the underlying disease. In many cases treatment of primary dysautonomia is symptomatic and supportive. Measures to combat orthostatic hypotension include elevation of the head of the bed, frequent small meals, a high-salt diet, and drugs such as fludrocortisone, midodrine, and ephedrine. The outlook for patients with dysautonomia depends on the particular diagnostic category. Patients with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest in such patients. The NINDS supports and conducts research on dysautonomia. This research aims to discover ways to diagnose, treat, and, ultimately, prevent these disorders. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=dysautonomia+AND+human[mh]+AND+english[la]+AND+(review[ptyp]+OR+review+literature[mh]+OR+practice+guideline[ptyp]+OR+guideline[ptyp]+OR+clinical+trials[mh]+OR+clinical+trial[ptyp]+OR+consumerj[sb])&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=2+Years 1 http://clinicaltrials.gov/ct2/results?term= /disorders/dysautonomia/pubs_dysautonomia.htm /disorders/dysautonomia/xml_dysautonomia.xml xml_dysautonomia.xml Autonomic DysfunctionFamilial DysautonomiaRiley-Day Syndrome V60 National Dysautonomia Research Foundation

P.O. Box 301

Red Wing MN 55066-0301 ndrf@ndrf.org http://www.ndrf.org 651-267-0525 651-267-0524 Non-profit foundation established to help those afflicted with any of the various forms of dysautonomia. Provides a support network for affected individuals and family members by providing information on the various forms of dysautonomia, as well as providing contacts to other organizations that may be of assistance. V91 National Organization for Rare Disorders (NORD)

55 Kenosia Avenue

Danbury CT 06810 orphan@rarediseases.org http://www.rarediseases.org 203-744-0100 Voice Mail 800-999-NORD (6673) 203-798-2291 Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. V802 Dysautonomia Foundation

315 W. 39th Street

Suite 701 New York NY 10018 info@familialdysautonomia.org http://www.familialdysautonomia.org 212-279-1066 212-279-2066 Non-profit organization that supports medical research grants and clinical care; provides information; and offers chapters nationwide and overseas. V705 Familial Dysautonomia Hope Foundation, Inc. (FD Hope)

121 South Estes Drive

Suite 205-D Chapel Hill NC 27514-2868 info@fdhope.org http://www.fdhope.org 919-969-1414 Non-profit organization that works to expand and accelerate research towards a cure for familial dysautonomia and to improve the lives of children and adults challenged by the disease. Funds research programs, provides a support network for patients and families, and promotes education and awareness in the medical community and public. V206 Shy-Drager/Multiple System Atrophy Support Group, Inc.

8311 Brier Creek Parkway

Suite 105-434 Raleigh NC 27617 vjames@shy-drager.org or jbiedenharn@shy-drager.org http://www.shy-drager.org 1-866-737-5999 National support group that collects and disseminates information and promotes education and support for people affected by Shy-Drager Syndrome or multiple system atrophy. V866 Dysautonomia Youth Network of America, Inc.

1301 Greengate Court

Waldorf MD 20601 info@dynainc.org http://www.dynakids.org 301-705-6995 301-638-DYNA Nonprofit support and outreach network dedicated to serving youth diagnosed with various dysautonomia conditions. Provides peer and educational support, serves as a member forum for parents and youth, and sponsors a summer conference.