Rare Diseases |

What is a rare disease?

>Rare diseases are diseases that affect a small number of people, usually fewer than 1 in 2,000
>A rare disease may be more common in some parts of the world, among certain populations and at different time periods
>They are often genetic diseases, but could also be infectious or auto-immune diseases
>They are often serious chronic or life-threatening diseases

Some rare diseases such as Legionnaires' disease, listeriosis (contaminated food), rabies, sickle cell disease, amyotrophic lateral sclerosis (Stephen Hawking's disease), Crohn's disease, cystic fibrosis, Down syndrome, and Creutzfeldt-Jakob disease ("mad cow disease")have a higher profile than others among the general population as they are often covered by the media.

To see a full list of rare diseases, go to the Encyclopaedia for Patients alphabetical list from Orphanet. Click on a disease to get the information sheet. Limited information including abstract, synonyms, general discussion and organizations can also be accessed for free through the Rare Disease Database compiled by NORD (National Organization for Rare Disorders).

If you know someone who has been diagnosed with a rare disease, a good first place to go is For Patients and Families by NORD. Read patient stories, connect with others who have the same rare disease, get news about clinical trials, or ask a nurse or a genetic counselor in the Patient Information Center.

For news, events and current issues in Canada, go to the Canadian Organization for Rare Disorders.

Check out the Library's recent books about specific rare diseases. To see which branch has a copy of the book and to place a hold, click on the title or cover link;


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