1. ISMRD - About ISMRD Information about the organization, its mission and services. Provides support, education and research on Alpha mannosidosis and other similar disorders. http://www.mannosidosis.org/

About ISMRD (home page) Governance History Penguins Professional Advisory Board ... ISMRD Site Map ISMRD is an internationally focused nonprofit organization whose mission is to advocate for families and patients affected by one of the Glycoprotein Storage Diseases: Alpha-Mannosidosis, Aspartylglucosaminuria, Beta-Mannosidosis, Fucosidosis, Galactosialidosis, Mucolipidosis II (I-Cell Disease), Mucolipidosis III (Pseudo-Hurler Polydystrophy), Schindler Disease and Sialidosis. These diseases are the ultra-orphans of the Lysosomal Storage Disease family, which encompass over 40 similar disorders, and currently have few treatments beyond symptomatic care. ISMRD's advocacy efforts are not limited by borders, language, race or religion. With the benefit of a crystal ball ISMRD's Board of Directors envisions a future where children are detected early, treated effectively and go on to live long, healthy and productive lives. In this new reality science, medicine and families will have collaborated to find cures where none exist today and the need for an organization such as ISMRD will no longer exist. We invite you to utilize our website to learn more about these diseases and ISMRD's role in bringing our vision to reality. Please

2. Mannosidosis mannosidosis May Also Be Called Lysosomal AlphaD-Mannosidase Deficiency Note To Visitors http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

3. Alpha Mannosidosis Clinical Information Are there many forms of alpha mannosidosis? What are the typical symptoms of alpha mannosidosis and how can they be remedied? How do these symptoms develop http://www.mannosidosis.org/alphaman/amanclinic.htm

start page clinical aspects biochemical info genetics therapeutic approaches Index How long has the disease been known? What is wrong? How does this affect the body? Where is alpha mannosidosis found and how is a diagnosis made? ... How can patients work socially? How long has the disease been known? The existence of so-called Hurler-like diseases had been known for many years when in 1967 Oeckermann in Lund, Sweden, described a boy who represented an isolated case of an apparently new disorder. Mental retardation, susceptibility to infection, coarse features, and skeletal abnormalities were seen. Abnormal white blood cells containing so-called vacuoles were found. The child died of an infection, and in the tissues total mannose, a particular sugar, was strikingly increased and alpha-mannosidase activity, the enzyme which normally should take care of these sugars, showed to be only a few per cent of expected. Since then, the disease has also been found in a number of other species, like in cattle and in cats. Back to Contents What is wrong?

4. NORD - National Organization For Rare Disorders, Inc. Offers alternative names, a general discussion and resources. http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Mannosidosis

5. International Society For Mannosidosis Related Diseases Information about the organization, its mission and services. Provides support, education and research on Alpha mannosidosis and other similar http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

6. Mannosidosis mannosidosis is a rare lysosomal storage disorder of the oligosaccharide family and closely Alphamannosidosis was first described by Dr Oekermann, http://www.mpssociety.co.uk/mannosidosis.htm

Society for Mucopolysaccharide Diseases 46 Woodside Road, Amersham, Buckinghamshire, HP6 6AJ, UK Tel: 0845 389 9901 Fax: 0845 389 9902 National Registered Charity No. 287034 Home Diseases Advocacy Support Information Resource ... Terms and Conditions Mannosidosis Mannosidosis is a rare lysosomal storage disorder of the oligosaccharide family and closely related to the Mucopolysaccharidoses. Alpha-Mannosidosis was first described by Dr Oekermann, from Lund in Sweden, in 1967. There is another variant known as Beta-Mannosidosis which is extremely rare and has produced a wide range of clinical abnormalities in the few patients described with this disorder. Mannosidosis is an enzyme deficiency disorder which results in defective mannosidase activity and the accumulation of mannose-rich oligosaccharide chains. This accumulation is responsible for many problems that affect individuals with Mannosidosis. Whilst there is no cure for individuals affected by this disorder, a booklet published by the MPS Society sets out to demonstrate the presentation and clinical management of this disease. The prospect of new therapies is also addressed. The booklet draws on the experiences of parents and doctors and with reference to medical literature. What causes Mannosidosis?

7. Taryn's World: All About Switches Personal page for kids and parents about genetic disorders, especially mannosidosis. http://www.tarynsworld.org/taryn/switches.htm

lost? you're in Taryn's World..and Welcome to it! Switches? Wanna know what's going on in your body or in the body of your brother, sister or friend? Especially when stuff makes you tired, or hurt or different from other kids your age? Well, you've come to the right place! Here's what we've got in store for you in this part of Taryn's World: a kid's guide to switches the scoop on the poop from one who knows! ethan's feeling switch the story of a boy who had a special switch that made everyone happy! taryn's club med here's where you can find stories about other kids with switches! one among billions a picture book for older kids who have switches! health for kids : neat places where we can go to learn more about our bodies, feelings and switches! for adults here 'r places where your parents can go for a grown-up explanation about switches!

8. Alpha Mannosidosis Clinical Information Alpha mannosidosis Information for Families Professionals Where is alpha mannosidosis found and how is a diagnosis made? http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

9. Mannosidosis International Society for mannosidosis Related Diseases, Inc. The International mannosidosis in people - mannosidosis in people Diagnosis of ? http://www.health-nexus.com/mannosidosis.htm

The #1 Health information site Health-Nexus.Net Health-Nexus.Org Home ... Up Search Health-Nexus for: Match ALL words Match ANY word Email this page to a friend ! Post a question or comment on our Message Board Home Page Health Specialties Health News ... Alternative Health Options Substance Abuse Animal Health Search: Books Magazines Video Keywords: Find it Here Mannosidosis MANNOSIDOSIS -THE DISEASE Mannosidosis: The Disease The Tromso Mannosidosis Group This is information from the Troms¸ Mannosidosis Group, University of Troms¸, Norway, edited by Senior Consultant Dag Malm (Clinical aspects), Institute of Clinical Medicine ... Mannosidosis in people Mannosidosis in people Diagnosis of ?-mannosidosis was made on demonstrating abnormal urine oligosaccharide secretion and direct measurement of ?-mannosidase activity in leukocytes or fibroblasts ... European Mannosidosis Research Consortium The European Alpha Mannosidosis Research Consortium ... lysosomal storage disease alpha-mannosidosis This is ... sponsored research consortium on a-mannosidosis. Parts of this site are ... Mannosidosis Peeling the Onion: The Genetics of Alpha Mannosidosis ... see also our comprehensive section on Alpha-Mannosidosis. Alpha-mannosidosis is a lysosomal storage disorder. ... Alpha Mannosidosis Patient/Family Resources Alpha Mannosidosis Clinical Resources Mannosidosis articles, support groups, and resources

10. GeneReviews Alpha-Mannosidosis Your browser does not support HTML frames so you must view Alphamannosidosis in a slightly less readable form. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

11. Storage Disorders mannosidosis is a lysosomal storage disease resulting from a deficiency of the In feline alphamannosidosis, the accumulated oligosaccharides primarily http://www.ivis.org/special_books/Braund/braund18/chapter_frm.asp?LA=1

12. National Tay-Sachs Allied Diseases Association An organization offering support and programs geared to families affected by TaySachs Disease and over 40 other fatal degenerative genetic http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. OMIM - MANNOSIDOSIS, BETA A, LYSOSOMAL http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=248510

14. National MPS Society - The National MPS Society is a nonprofit organanization advocating for families affected by the Mucopolysaccharide diseases. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. OMIM - MANNOSIDOSIS, ALPHA B, LYSOSOMAL http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=248500

16. Page_template National Registered Charity No. 287034. mannosidosis. mannosidosis is a rare mannosidosis is a rare lysosomal storage disorder of the http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. Mannosidosis, Alpha International network. Founded 1999. Provides emotional support for families affected by any oligosaccharide http://my.webmd.com/hw/health_guide_atoz/shc29man.asp

var guid_source = ""; var guid_source_id = ""; //unused var encodedurl = ""; WebMD Today Home WebMD News Center XML News via RSS Member Services WebMD University My WebMD Find a Physician Medical Info Check Symptoms Medical Library Health Tools Clinical Trials ... Women, Men, Lifestyle Who We Are About WebMD Site Map You are in Medical Library Our Content Sources Ask A Question Clinical Trials Health Guide A-Z Health Topics Symptoms Medical Tests Medications ... International Society for Mannosidosis and Related Diseases Mannosidosis, Alpha International Society for Mannosidosis and Related Diseases International network. Founded 1999. Provides emotional support for families affected by any oligosaccharide disorders of lysosomal storage. Offers educational resources for medical community. Promotes research to develop treatments. Phone support, literature, pen pals, information and referrals, newsletter, advocacy. Online message boards, chat rooms and e-mail discussions. WRITE: 3210 Batania Ave. Baltimore, MD 21214 CALL: 410-254-4903 E-MAIL: info@mannosidosis.org

18. MANNOSIDOSIS Features Listed For mannosidosis McKusick 248500. Ataxia Beaked/wedged vertebrae Cataract Cloudy corneae/sclerocornea Coarse http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

19. Alpha-Mannosidosis Alpha mannosidosis is one of a group of very rare inherited disorders known as glycoprotein and related http://my.webmd.com/hw/raising_a_family/nord420.asp

var guid_source = ""; var guid_source_id = ""; //unused var encodedurl = ""; WebMD Today Home WebMD News Center XML News via RSS Member Services WebMD University My WebMD Find a Physician Medical Info Check Symptoms Medical Library Health Tools Clinical Trials ... Women, Men, Lifestyle Who We Are About WebMD Site Map Health Topics Symptoms ... For a Complete Report Alpha-Mannosidosis Important It is possible that the main title of the report Alpha-Mannosidosis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. Synonyms Lysosomal Alpha-D-Mannosidase Deficiency Alpha-Mannosidase B Deficiency Mannosidase, Alpha B, Lysosomal Mannosidosis Mannosidosis, Alpha B, Lysosomal Disorder Subdivisions None General Discussion Alpha-mannosidosis is one of a group of very rare inherited disorders known as glycoprotein and related storage diseases. These disorders are caused by a defect in the breakdown of complex molecules in the cells, as a result of an enzyme deficiency. The enzyme that is lacking is known as alpha-D-mannosidase. The molecules that are not broken down are stored in the small components within cells known as lysosomes. The approximately 50 diseases in which this occurs are known as lysosomal storage diseases. In addition to alpha mannosidosis and a related disorder, beta mannosidosis, the lysosomal storage disorders include Fabry disease, Gaucher disease, cystinosis, aspartylglycosaminuria, the mucopolysaccharidoses, the mucolipidoses, and others.

20. European Mannosidosis Research Consortium European mannosidosis Research Consortium http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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