Diseases Diseases

How To Find a List Of Rare Diseases

Published at 03/28/2012 16:35:38


It is easy to find information about common diseases, as these are encountered often and can be cured easily. But there are also other diseases more difficult to treat and less common than others. The list of rare diseases is under a continuous change, with an increasing tendency of the number of hard to tread diseases. But if the list of rare diseases is increasing continuously can be a good thing, as this means that scientist are making more efforts to discover various affections, with a positive hope that cures will be developed for most of these. If you want to find out what are the rarest known disorders, here is some information on how to find a list of rare diseases.

Step 1

Step #1: Search on the internet

Nowadays, the internet is a powerful tool for finding out almost any information you need. There are some websites offering information related to rare conditions, and from where you can also get a list of rare diseases. Wikipedia, Toptenz.net, Listof.org, are some of the sources from where you can download lists with rare diseases.

Step 2

Step #2: Download publications

There are some institutions specialized in studying rare diseases, from where you can download rare diseases information and related terms. Results of their latest studies are offered to the public, and from these publications you might also find a list of rare diseases. Remember that the content of these lists can change over time, and the number of rare diseases presented can vary, if the lists are obtained from different sources. Most publications are available in an easy to print format, while others are made available as PDF files.

Step 3

Step #3: Contact a researching institution

Many researching institutions are updating continuously their list of rare diseases. Some of the institutions operating in the rare diseases domain are: the Office of Rare Diseases Research, the National Human Genome Institute, or the Genetic and Rare Diseases Information Centers. If the lists are not available online, you can contact them directly by mail or email for requiring a list of rare diseases. Rare diseases information centers are also posting on their websites various question received from public.

Step 4

Step #4: Buy a specialized book

Visiting a library and buying a book might seem old, but the library remains the best place to find what you need. Many books and publications can offer you a list of rare diseases among other interesting information related to rare disorders. Specialized books are also offering rare diseases definitions, causes, treatments and results of latest researches.

Step 5

Step #5: Participate to scientific conferences

The Office of Rare Diseases Research (ORDR) for example, is collaborating with various Centers, Institutes, and Offices to organize various scientific conferences. They are cosponsoring these activities in order to stimulate the researches studies of rare diseases. These scientific conferences are also offering participants solutions to take advantage of various scientific opportunities.


By attending to one of these conferences, you can have the opportunity to get information about latest diseases discovered, in order to update your list of rare diseases.