Today was one oof the happiest day in my life. After year long discussion the proposal to set up COEMRD ( Center of Excellence for Management of Rare Diseases. was approved by steering committee of IGICH ( Indira Gandhi Institute of Children Health, a termitary care hospital in the state.

This was a dream of starting a day care ward for ERT – Enzyme replacement Therapy for LSD.  This is an out come of my experience taking Nidhi every fortnight to Manipal Hospital and to address below challenges

1. Life long ERT and hence need of a exclusive ward with all the infrastructure.
2. Reduce monthly cost of avg 6000 per month
3. Need of Nurses who understand little LSD children who needs to prick every week.
4. Peace of minds to parents and a place where they dont have to discuss, request every time to a new staff of the hospital.