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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 Down syndrome, Fragile X syndrome, sickle cell anaemia (these not especially rare), muscular dystrophy, 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:-
| Contact a Family | Great Britain |
| National Organization for Rare Diseases | United States of America |
| New Zealand Organisation for Rare Diseases | 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.." button for fuller details.
| Ela | Gold | New South Wales | Australia | ||
| Dr. | Delia | Chiaramonte | Maryland | United States of America | |
| Mr. | Benjamin | Bartlein | Minnesota | United States of America | |
| Ms. | Betsy | Ysteban | Nevada | United States of America | |
| Mr. | Robert Malik | Lawrence | North Carolina | United States of America | |
| Mr. | Seishiro | Hokazono | Oregon | United States of America | |
Other Helpful Things
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| BBC Health News | CNN Health News |
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| 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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