About Rare Diseases India

Rare Diseases India (RDI) is a volunteer-driven online entity, established in 2009, relying on contribution of knowledge and time by volunteers for the cause of rare diseases and disorders. RDI is a knowledge disseminator  now merged and functions under its parent organization, Foundation for Research on Rare Diseases and Disorders, and is registered in 2010 as a not-for-profit non-governmental organization and is based in Chennai, India.

RDI aims to become an all-around quality scientific data resource concerning rare diseases and disorders. It seeks students, volunteers, patients and their family members, health care professionals and experts to participate in the process by writing rare disease reviews, gathering information on rare disease patient distribution, donating rare disease biospecimen (blood, tissues etc.) and providing educational advice for rare diseases and disorders sufferers. Most rare diseases and disorders have no borders, so does RDI and it hopes to provide a platform for the entire south Asia and beyond to rise up to the common cause. 

Vision: To ameliorate the sufferings of people afflicted with rare diseases and disorders and to help general population develop compassionate perception of those sufferers by education and research.

Mission: To identify, document, treat and seek to cure patients of rare diseases and disorders by education and research. To establish easy-to-understand disease specific medical literature database to help patients, families, health care professionals and scientific researchers and to establish a comprehensive rare diseases and disorders patient registry, and biospecimen repository.

Objectives:

1. To develop rare diseases and disorders specific information database with country specific data.

2. To identify existing scattered rare diseases and disorders registries as well as patient support groups within the country and coordinate them to develop a comprehensive online rare diseases and disorders registry.

3. To develop rare diseases and disorders biospecimen repository for researchers.

4. To make available these resources for rare diseases and disorders patients, health care professionals, epidemiologists, basic and clinical researchers and policy makers.