Pompe foundation is a Trust started by the parents of a little girl who is fighting against this orphan disease, the Pompe foundation is here to help ease the burden of patients and parents of Pompe.
Mr. Prasanna Shirol and Mrs. Sharada Shirol Nidhi took 7 years to diagnose the deadliest rare disease Pompe for their daughter Nidhi for the first time in India after visiting several hospitals. Treatment and taking care of his daughter was their next challenge and was beyond their reach as the cost of treatment is prohibitive. They have been struggling from last 12 years to take care of their daughter. Pompe, being the deadliest and costliest disease among 40+ (LSD) to treat and maintain and the no of patients being increased in India due to increased awareness among doctors. They felt the immediate need to support the parents of Pompe children before they collapse economically and psychologically, hence the birth of Pompe foundation.
Maj. (Retd) S.C .Choukimath, the main motivation to start this foundation to support and share our experience of taking care of Pompe Patients. He is into several social activities.
This being supported by Mr. Sanjay Belawal
Campaign for early diagnosis and effective, affordable and safe therapies for Pompe in India and support to all patients, families, caretakers and others with interests in the related diseases
- To support all the parents for treatment and Supportive in time.
- Advocacy with Govt for a proper Health care model for Pompe Disease in India.
- To create awareness among medical fraternity.
- To promote early diagnosis and new born screening.
- To share the experience among the Pompe Community.