1. Batten Support & Research Trust Information about this disorder, fund raising and links from The Batton Support and Research Trust. http://www.bsrt.co.uk

WE HAVE MOVED TO http://www.bsrt.org.uk

2. NINDS Batten Disease Information Page Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/health_and_medical/disorders/batten.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Batten Disease Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Batten Disease Information Page Synonym(s): Neuronal Ceroid Lipofuscinosis Reviewed 07-01-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Batten Disease? Is there any treatment? What is the prognosis? What research is being done? ... Related NINDS Publications and Information What is Batten Disease? Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. In some cases, the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Symptoms of Batten disease are linked to a buildup of substances called lipopigments in the body's tissues. Lipopigments are made up of fats and proteins. Because vision loss is often an early sign, Batten disease may be first suspected during an eye exam. Often, an eye specialist or other physician may refer the child to a neurologist. Diagnostic tests for Batten disease include blood or urine tests, skin or tissue sampling, an electroencephalogram (EEG), electrical studies of the eyes, and brain scans.

3. BDSRA - Batten Disease Support And Research Association batten disease Support and Research Association seeks to link medical professionals with patients. Get information on local chapters. Facts and Fictions about batten disease in English and en Espanol http://www.bdsra.org/

2003 BDSRA International Family Conference Annual Quilt Raffle! R eceive "Flight of the Dancers" signed print and raise money for Batten research ..., click picture for more information: Facts and Fictions about Batten Disease in English and en Espanol Faces of Batten "angels among us ..." Batten Disease Testing Sign Our Guest Book help raise awareness Scientific/Medical Advisory Boards Bulletin Boards on several related subjects Recent NCL Publications The Family Room chat rooms see 2003 RFP The Illuminator newsletter, w /April 2003 Gene Mutation Database and Articles The Lighthouse now includes Winter 2003 9th International Congress on NCL In the News family news, see special hotel rates! Related Links Robby Benson , spokeperson supports BDSRA CFC Agency 2992 Federal employees support us Page Updated/Reviewed

4. BDFA Batten Disease Family Association Homepage Information about the BDFA, which provides supportive, informative, networking for the families, carers and professional giving care to children and adults with this disease in the United Kingdom. http://www.bdfauk.freeserve.co.uk/

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5. BDSRA - Batten Disease Support And Research Association BDSRA goals, support groups, local chapters, and resources for parents and families of batten disease Category Health Conditions and Diseases Genetic Disorders Batten...... Facts and Fictions about batten disease in English and en Espanol. http://www.bdsra.org/&e=747

6. BDSRA - Batten Disease Support And Research Association What is batten disease? batten disease is named after the British pediatricianwho first described it in 1903. What are the forms of NCL/batten disease? http://www.bdsra.org/batten.htm&e=747

7. BDFA Batten Disease Family Association Homepage Information about the BDFA, which provides supportive, informative, networking for the families, Category Health Conditions and Diseases Genetic Disorders Batten......batten disease Family Association. A supportive, informative, networkingorganisation for the families, carers and professional http://www.bdfauk.freeserve.co.uk/&e=747

8. Home Page Information for parents and researchers regarding batten disease also know as Juvenile Neuronal Ceroid Lipofuscinoses (JNCL). http://www.jnclresearch.org

The JNCL Research Fund is committed to seeking out and supporting science of excellence, relevant to the discovery of treatments for the most common degenerative brain disease of children, JNCL (commonly known as Batten Disease). This site has information for scientists, parents of affected children and all those interested in supporting our goals. Throughout this site you will discover what we have accomplished and where we intend to go. You are visitor # The JNCL Research Fund is a public, tax-exempt, non-profit organization pursuant to Section 501(c)(3) of the Internal Revenue Code, and all gifts and donations to the Fund are tax deductible. 100% of your donation is applied directly to research. last updated March 5th 2001 Web design by SlikWeb

9. The Family Village - Batten Disease Who to Contact batten disease Support and Research Association (BDSRA) 2600 Parsons Avenue Columbus, Ohio, USA 432072972 Related Disorders Santavnori, Jansky, Bielschowsky, Spielmeyer, Sjogren, Kuf, Parry. http://www.familyvillage.wisc.edu/lib_batt.htm

Batten Disease Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Batten Disease" Who to Contact Batten Disease Support and Research Association (BDSRA) 2600 Parsons Avenue Columbus, Ohio, USA 43207-2972 Related Disorders: Santavnori, Jansky, Bielschowsky, Spielmeyer, Sjogren, Kuf, Parry. The Batten Disease Support and Research Association (BDSRA) is an international support and research networking organization that works with families of children and young adults with the inherited neurological degenerative disorder, Battens Disease. They act as a national registry for NCL researchers throughout the world, maximize the opportunities of patients with Batten to lead as normal a life as possible, educate lay persons and professionals about the special needs of patients and their families, and provide a parent communication network for information and emotional support. The association has local chapters and a directory of these is available. They will provide assistance to an individual who wishes to start a local support group, and do parent-to-parent matching. The Batten Disease Support and Research Association publishes a quarterly newsletter

10. About BDFA Batten Disease Family Association Homepage About batten disease Family Association. About BDFA. The principal aim of the groupis to provide contact and support to families affected by batten disease. http://www.bdfauk.freeserve.co.uk/about.htm&e=747

11. NINDS Batten Disease Information Page Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.Category Health Conditions and Diseases Genetic Disorders Batten......batten disease information sheet compiled by NINDS, the National Instituteof Neurological Disorders and Stroke. More about batten disease, http://www.ninds.nih.gov/health_and_medical/disorders/batten.htm&e=747

12. Batten Disease Fact Sheet batten disease Fact Sheet (includes infantile, late infantile, juvenile, andadult forms). Where can I find more information? What is batten disease? http://www.ninds.nih.gov/health_and_medical/pubs/batten_disease.htm&e=747

13. What Is Batten Disease? An article about batten disease, its history, a look at neuronal ceroid lipofuscinoses disorders, Category Health Conditions and Diseases Genetic Disorders Batten......batten disease What is batten disease? batten disease is a fatal, inheriteddisorder of the nervous system that begins in childhood. http://www.medhelp.org/lib/batten.htm&e=747

14. Med Help International An article about batten disease, its history, a look at neuronal ceroid lipofuscinoses disorders, how they are inherited, statistics, causes, diagnosis, treatment and research. http://medhlp.netusa.net/lib/batten.htm

15. Batten Disease Articles, Support Groups, And Resources batten disease articles, support groups, and resources for patientsfrom Med Help International (www.medhelp.org). batten disease. http://www.medhelp.org/HealthTopics/Batten_Disease.html&e=747

16. The Contact A Family Directory - BATTEN DISEASE printer friendly, batten disease, batten disease FAMILY ASSOCIATION.batten disease Family Association c/o Heather House Heather Drive http://www.cafamily.org.uk/Direct/b11.html&e=747

17. The Family Village - Batten Disease Library A B batten disease. batten disease Support and Research Association(BDSRA) 2600 Parsons Avenue Columbus, Ohio, USA 43207-2972 (800) 448-4570. http://www.familyvillage.wisc.edu/lib_batt.htm&e=747

18. Batten Disease What Is batten disease? Medically Speaking batten disease is the juvenileform of a group of progressive neurological diseases called http://www.nataliefund.org/batten.html&e=747

19. The Natalie Fund The Natalie Fund. In Search of a Treatment and Cure for batten disease. TheNatalie Fund is striving to find a treatment and a cure for batten disease. http://www.nataliefund.org/&e=747

20. Batten Disease batten disease is a fatal, inherited disorder of the nervous system that beginsin childhood. Receive HealthLink via email! Subscribe now . batten disease. http://healthlink.mcw.edu/article/921388974.html&e=747

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