• 1) Awareness in the Indian medical community about rare diseases is poor and therefore patients are often diagnosed late and proper management doesn’t begin early enough.
• 2) Approved supportive therapies such as enzyme replacement therapies and bone marrow transplantation (BMT) can significantly improve patient health, but reliable information on them is not easily available.
• 3) There are no existing government schemes or medical insurance policies to support patients suffering from rare diseases.
• 4) Only a limited number of specialists and treaters are available in India, and treatment is confined to very few hospitals.
• 5) Awareness and advocacy for rare diseases have mainly been driven by patient-family support groups, but very few organized patient groups exist in the country.

Hence, we felt the strong need to build an organization dedicated to furthering this cause by all possible means.