My daughter baby Sera is diagnosed with a very rare genetic disease, Infantile Hypophosphatasia. She’s the only one in India at present who’s been diagnosed with the disease. She needs an orphan drug, ASFOTASE ALFA , which has an exhorbitant cost of 2.5Crore per year and it will increase with each passing year. This is the only therapy available world wide at present.

We’ve spent 75L so far and have been chasing GOI and also MINISTRY OF HEALTH, GOI since last December. We’ve even applied for NRDP fund for rare diseases of 50Lacs, MOHFW and GOI is not even willing to help with rare diseases fund, claiming it won’t be enough for one year medicine. Meanwhile my daughters medicine is running out.

GOI has almost allocated 100crores every year for rare diseases fund  only 10% of it is used in past few years, which is stuck in bureaucracy.

We request MOHFW and policy makers to consider and implement to give more support and fund to rare category 3 (a&b) , like Sera, as 50Lac aid is not a long term support, instead of leaving them in peril, we request GOI and MOHFW to take care of their treatment expenses, there are more research and upcoming drugs in few years, letting these children and patients suffer without help when they can be saved is inhuman. 

REQUEST GOI TO SUPPORT AND SAVE BABIES AND CHILDREN LIKE MY DAUGHTER SERA. OUR COUNTRY IS PURCHASING WEAPONS FOR FEW THOUSAND CRORES CANT THEY ALSO SAVE SUCH CHILDREN, WHO WILL BECOME FUTURE GENERATION.