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Rare Diseases


What are Rare Diseases


Many diseases affect only a few people worldwide. Here is an opportunity to make contact with fellow sufferers.

A high proportion of these diseases have a genetic origin, in that they are the physical and psychological manifestations of abnormal genes. The current tally is more than 4,000 different diseases. These include , Fragile X syndrome, sickle cell anaemia (these not especially rare), the muscular dystrophies, Tay Sachs disease, cystic fibrosis and many others.

Please post the name of your disease and see what happens!


We at Shared Care can provide support for you through the community and the editorial board.


 

 

Who Can Help Rare Diseases?

Support Groups

There are very many of these related to the conditions suffered.

Please access the organisation's website to find current contact details

Good overall sites are:-

Great Britain
United States of America
New Zealand

Please email me at editor(at)shared-care.com to add any organisation. Thank you.



Who has a Special Interest in Rare Diseases?

Please click on the MORE INFORMATION link for fuller details.

Ela Gold Kyogle,  New South Wales,   Australia
Dr. Delia Chiaramonte Baltimore,  Maryland,   United States of America
Mr. Benjamin Bartlein Minneapolis,  Minnesota,   United States of America
Ms. Betsy Ysteban Reno,  Nevada,   United States of America
Mr. Robert Malik Lawrence Carrboro,  North Carolina,   United States of America
Mr. Seishiro Hokazono Corvallis,  Oregon,   United States of America

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Please note:-Shared Care takes no responsibility for the safety, accuracy, style or otherwise of any external site to which we are linked and linking does not imply an endorsement of the linked site or its contents.
 
Any testimonials (in italics) are the views of the contributors as posted on the relevant website and not those of Shared Care.
 
Please let us know at editor(at)shared-care.com if you have any comments about our coverage of Rare Diseases. Thanks (ed.)
 


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