Rare Diseases India (RDI) is a non-profit which was established in 2009.
Its goal: to advocate for the citizens of India living with rare diseases, in addition to their counterparts around the globe.
On their homepage, you can see tables documenting the effect of rare diseases in South Asia, India, and Union Territories of India. They understand that rare diseases are a global issue, and they founded their organization as a way to contribute to the rare disease community on an international scale.
Among their services are:
- A Patient Advocacy Group Database listing numerous advocacy groups within the country (If you would like your group, use http://www.rarediseasesindia.org/contact)
- An Authors’ Corner, for patients and professionals to contribute their own knowledge to the plethora on the site
- A database which attempts to keep track of the number of India’s citizens affected by rare disease. (Although RDI realizes it’s impossible for this list to be comprehensive due to the number of individuals who are still undiagnosed)
- A Rare Diseases Review, simplifying the language used to explain a variety rare diseases so that anyone with an interest can understand
Their site serves as a platform for information and discussion, but they emphasize that their readers’ contributions are what truly makes it what it is. They have a special segment of their website dedicated to recognizing the “Knowledge Contributors” who have helped ensure the site is continually stocked with the most accurate information.
RDI’s parent organization is the Foundation for Research on Rare Diseases and Disorders (FRRDD) which is a registered non-profit NGO based in India.
As a team, they have participated in various worldwide rare disease events such as the World Orphan Drug Congress USA in 2012. They’ve also hosted four annual events within India celebrating National Science Day & Rare Disease Day, the most recent of which was on February 26, 2017, in Chennai, India.
RDI also offers an informational video on how rare diseases impact citizens of rural India, where it is most difficult to access medical care.
In order to best serve the rare disease community, we need to know everyone who is a part of it. Organizations like RDI are helping to make the world more aware of rare diseases.
