Rare Disease Day Union Health Ministry Gift To Rare Disease Children

New Delhi. Rare Disease Day is celebrated every year on this day, but today’s day and this date is special because today the wait of years is over. A news of relief has come to the fore for people suffering from rare diseases. People were waiting for this news and this help for a long time and now today they have received this gift from the Ministry of Health.

The Health Ministry has started providing government assistance to patients suffering from rare diseases. After the implementation of the policy in 2021, this is happening for the first time that patients suffering from rare diseases are going to get this help. Applications have been approved under the national policy.

There are many people who are living a miserable life due to suffering from rare diseases and they are not getting any help. Many of these families are waiting for government help since 2021, but they have not been helped till date. Two years have passed in waiting for help.

According to the documents, the Ministry of Health and Family Welfare (Rare Disease Cell) had written a letter to CGH-IGI for financial help under the umbrella scheme of the National Health Fund in the year 2022-23. After this, 22 families of Bengaluru, Karnataka will be helped with the government amount of 3.15 crores released.

4 families have been registered at the Center for Excellence in Kolkata. Of these, 2 patients are suffering from Gauchar, while 2 patients are suffering from MPSI. The ministry has released Rs 22 crore for 134 patient families. But the move is believed to be just the beginning as there are 453 patients whose children are suffering from rare diseases and many more who have very little time and by the time they are diagnosed with the disease, it is too late. it occurs.

There are many patients who are waiting for government funds for the treatment of both Lysosomal Storage Disease and Non Lysosomal Storage Disease.

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Tags: Health, Health ministry, Lifestyle