Volunteers Needed

Launched in 2010, the website is affiliated to the Foundation for Research on Rare Diseases and Disorders, a Chennai non-profit.

It provides information on over 400 rare diseases. It also provides basic reviews of the diseases as provided by volunteers, patients and their family members, and health experts. The site obviously requires more volunteers and experts as 21 diseases have been reviewed so far. There is also confusion in classification of diseases.

That said, the site is novel as it provides information on India specific rare diseases. For example, few would know about Handigodu Syndrome. The genetic disorder is named after a village in Shimoga district of Karnataka where it was first diagnosed in 1975. It affects the joints and cripples the victim. Over 1,000 in the region have succumbed to it.