The Patient Advocacy movement

The Patient Advocacy movement had many impacts: It caused orders of magnitude more funding for research into this disease; it compelled the government to actively engage with patients; it changed the way drug approval happened for this and some other diseases; it saved millions of lives; it created a model of how patient advocacy could run, and it was a movement that spread across the world. Advocacy by patients, their families and others has a venerable history, and this is accompanied by a strong ‘do it yourself’ attitude.

The Indian Institute of Cerebral Palsy (IICP) was esta-blished way back in 1975 by the mother of a child with cerebral palsy, who wanted to provide a positive envi-ronment for such children by empowering them with edu-cation and skill training. The institute has a formal course for training special educators. It has also established the National Resource Centre for Augmentative and Alterna-tive Communication (NRCAAC) in Kolkata, and works closely with IIT Kharagpur to develop devices which can aid in communication. This has helped many CP-affected persons lead a full life.

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