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17th May, 2017
India gets Rare Diseases Registry

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.
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Press Release
First of its kind national study by IMA, HCFI & Eris Lifesciences through the ABPM method reveals high incidence of hypertension amongst the medical fraternity

Record attempt of collecting 20,000 ambulatory blood pressure readings of over 500 doctors in 1 day 
Over 50% physicians found to be suffering from uncontrolled hypertension despite taking hypertensive medicines; 56% from irregular BP at night and 21% from masked hypertension

New Delhi, May 16, 2017: In what can be called as a massive feat, the Indian Medical Association, in partnership with the Heart Care Foundation of India(HCFI) and Eris Lifesciences in the form of an unconditional educational grant attempted to record the maximum number of ambulatory blood pressure readings amongst the medical fraternity in a single day. About 20,000 readings were taken of 533 doctors including those of the IMA leadership spanning 33 Indian cities. The aim being to raise awareness about the benefits of ambulatory blood pressure monitoring (ABPM) in the timely and correct diagnosis of hypertension on the occasion of the World Hypertension Day 2017.
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