India gets Rare Diseases Registry

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ICMR has set up a registry of rare diseases. Apart from maintaining a database, the registry which was set up on April 28 this year, will also help formulate policies on funding, treatment and more.

Some key points on rare diseases

• A disease is defined as rare when it affects less than one in 2,500 individuals,
• Over 70mn Indians suffer from such disorders and live with them throughout their lives.
• There are only 500 FDA-approved drugs for over 7,000 rare diseases globally
• There is often no cure, only supportive care. Treatment is extremely costly too, ranging from lakhs to crores a year.
• The health ministry is currently discussing a draft policy for treatment of rare diseases.

When I took over as the National President Indian Medical Association (IMA), in my presidential address on 28th December I had said, “IMA also wants the government to declare a special fund for rare diseases and orphan drugs.” IMA will focus on creating awareness about rare diseases and orphan drugs as part of its new initiatives.

Dr KK Aggarwal
National President IMA & HCFI