Union Health Minister Harsh Vardhan appealed to the corporate associations and PSUs to contribute generously to the cause of treatment of patients with rare diseases under CSR initiatives.

Rare disease committees have been constituted, nodal officers appointed and Rare Disease Fund Accounts have also been created at notified eight Centres of Excellence (COEs). Nidan Kendras in UMMID programme have been opened for genetic screening, he said.
Globally, eight percent of the population suffers from rare diseases. Seventy five percent of the survivors are children which makes parents run from pillar to post for their treatment, exhausting their resources and emotionally draining themselves in the process,” the minister was quoted as saying in the statement.

“So far, 5,101 children in the age group of 0-14 years were diagnosed with the disease. Seventeen children died of the infection since last year,” the minister said.

Noting that the third wave of the pandemic, which is likely to strike later this year, may pose a greater threat to the children, as suggested by experts, he said the state government is making necessary preparations in anticipation.