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  • contactus@rdif.org.in

About Us

WHO WE ARE

Rare Diseases India Foundation (RDIF) is a Non-Profit patient advocacy Organization dedicated to individuals with rare diseases, registered in 2019 in India. Acknowledging a felt need for increasing awareness, education, diagnosis, treatment, and management of rare diseases in the country, we have formed this foundation with an ultimate goal to work for them.

Purpose of the organization:

  • 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.
  • There are approved supportive therapies available for managing rare diseases such as enzyme replacement therapies that can improve the life and health of a patient significantly, but unfortunately, such information is not available easily from any reliable authority or source.
  • There are no existing government schemes or medical insurance policies to support those suffering from rare diseases.
  • There is no National Policy for Treatment of Rare Diseases in India.
  • There is no patient support system in place to support the families of rare disease patients.
  • Only a handful of treaters and specialists are practicing in India and treatment is limited to very few hospitals.
  • The cause of spreading awareness about rare diseases and advocating for government policies for them has always been led by support groups run by patients’ families. However, very few organized patient groups exist in the country.

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

OUR MISSION

To enable timely diagnosis, proper treatment, and management of rare diseases for all patients and ensure required support for affected patients and families.

OUR VISION

  • To increase widespread awareness of rare diseases and ways for their early detection & management and ensure education in related issues such as newborn screening, prenatal diagnostics and genetic counseling among all relevant stakeholders
  • To advocate for stronger policy support, funding and interventions necessary for rare disease management in the country
  • To help improve the standards of care for patients – including improved diagnostics and treatment in India.
  • To support and strengthen national patient register for reliable rare diseases information database
  • To collaborate with important stakeholders that can strengthen the cause of rare diseases in India

Outreach:

Pan India (with focus on States level advocacy and awareness to ensure greater State ownership of rare diseases)