New Delhi, 27th February, 2015: Rare Diseases Day was observed on 27th February to raise awareness about rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
Addressing a press meet , Dr A Marthanda Pillai and Dr K K Aggarwal, National President and Honorary Secretary General IMA, said that rare diseases does not mean they should be rarely read.
A Supreme Court Judgment (appeal 2867 of 2012) quoted “Finally, we hope and believe that the institutions and individuals providing medical services to the public at large educate and update themselves about any new medical discipline and rare diseases so as to avoid tragedies such as the instant case where a valuable life could have been saved with a little more awareness and wisdom from the part of the doctors and the Hospital. ”
IMA has advised the medical students not to ignore reading about rare disease and the practicing doctors to update their knowledge about rare diseases.
IMA wants separate budget for the same. In two recent high court judgments, the court had said “….on account of lack of Government planning, there is ‘pricing out’ of orphan