National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Batten Disease is not the name you expected.
Batten disease, a rare genetic disorder, belongs to a group of progressive degenerative neurometabolic disorders known as the neuronal ceroid lipofuscinoses. These disorders share certain similar symptoms and are distinguished in part by the age at which such symptoms appear. Batten disease is sometimes considered the juvenile form of the neuronal ceroid lipofuscinoses (NCLs). The NCLs are characterized by abnormal accumulation of certain fatty, granular substances (i.e., pigmented lipids [lipopigments] ceroid and lipofuscin) within nerve cells (neurons) of the brain as well as other tissues of the body that may result in progressive deterioration (atrophy) of certain areas of the brain, neurological impairment, and other characteristic symptoms and physical findings.
The symptoms of Batten disease usually become apparent between 5 and 15 years of age when progressive loss of vision, seizures, and progressive neurological degeneration develop. In some cases, initial symptoms may be more vague and include clumsiness, balance problems and behavioral or personality changes. Batten disease is inherited as an autosomal recessive trait and occurs most in families of Northern European or Scandinavian ancestry and is found worldwide.
For years, the term Batten disease was used to describe the chronic juvenile form of NCL (JNCL). Recently, some researchers have begun using the term Batten disease to encompass all types of neuronal ceroid lipofuscinoses.
Batten Disease Support and Research Association
- 1175 Dublin Road.
- Columbus, OH 43215
- Tel: (866)648-8718
- Email: firstname.lastname@example.org
- Website: http://www.bdsra.org
Beyond Batten Disease Foundation
- PO Box 50221
- Austin, TX 78763
- Tel: 512-275-2600
- Fax: 512-637-6333
- Tel: 1-877-6BATTEN
- Email: email@example.com
- Website: http://www.beyondbatten.org
CLIMB (Children Living with Inherited Metabolic Diseases)
- Climb Building
- 176 Nantwich Road
- Crewe, CW2 6BG
- United Kingdom
- Tel: 4408452412173
- Fax: 4408452412174
- Email: firstname.lastname@example.org
- Website: http://www.CLIMB.org.uk
Charlotte & Gwenyth Gray Foundation to Cure Batten Disease
- 6033 West Century Blvd Suite 350
- Los Angeles, CA 90045
- Email: email@example.com
- Website: http://www.curebatten.org
Children's Brain Diseases Foundation
- 350 Parnassus Avenue
- Suite 900
- San Francisco, CA 94117
- Tel: (415)665-3003
- Fax: (415)665-3003
- Email: firstname.lastname@example.org
Genetic and Rare Diseases (GARD) Information Center
- PO Box 8126
- Gaithersburg, MD 20898-8126
- Tel: (301)251-4925
- Fax: (301)251-4911
- Tel: (888)205-2311
- Website: http://rarediseases.info.nih.gov/GARD/
Hide & Seek Foundation for Lysosomal Disease Research
- 6475 East Pacific Coast Highway Suite 466
- Long Beach, CA 90803
- Tel: (877)621-1122
- Fax: (866)215-8850
- Email: email@example.com
- Website: http://www.hideandseek.org
Lysosomal Diseases New Zealand
- 167 Hollister Lane
- Tauranga, 6008
- New Zealand
- Tel: 75448868
- Email: firstname.lastname@example.org
- Website: http://www.ldnz.org.nz
- c/o Sara E Mole PhD
- MRC Laboratory for Molecular Cell Biology
- London, WC1E 6BT
- United Kingdom
- Tel: 442076797257
- Email: email@example.com
- Website: http://www.ucl.ac.uk/ncl
NIH/National Institute of Neurological Disorders and Stroke
- P.O. Box 5801
- Bethesda, MD 20824
- Tel: (301)496-5751
- Fax: (301)402-2186
- Tel: (800)352-9424
- Website: http://www.ninds.nih.gov/
National Association for Parents of Children with Visual Impairments (NAPVI)
- P.O. Box 317
- Watertown, MA 02272-0317
- Tel: (617)972-7441
- Fax: (617)972-7444
- Tel: (800)562-6265
- Email: firstname.lastname@example.org
- Website: http://www.napvi.org
National Batten Disease Registry
- New York Institute for Basic Research in Developmental Disabilities
- 1050 Forest Hill Rd
- Staten Island, NY 10314
- Tel: (718)494-5201
- Fax: (718)982-6346
- Tel: (800)952-9628
- Email: BattenKW@aol.com
National Pediatric Neuroinflammation Organization, Inc.
- 12001 Research Parkway
- Suite 236
- Orlando, FL 32826
- Tel: 877 359 8599
- Fax: 877 369 8488
- Email: email@example.com
- Website: http://www.omsusa.org
National Tay-Sachs and Allied Diseases Association, Inc.
- 2001 Beacon Street
- Brookline, MA 02146-4227
- Tel: (617)277-4463
- Fax: (617)277-0134
- Tel: (800)906-8723
- Email: firstname.lastname@example.org
- Website: http://www.NTSAD.org
- 1825 K Street NW, Suite 1200
- Washington, DC 20006
- Tel: (202)534-3700
- Fax: (202)534-3731
- Tel: (800)433-5255
- Email: email@example.com
- Website: http://www.thearc.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
Last Updated: 9/23/2007
Copyright 2007 National Organization for Rare Disorders, Inc.
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