New Delhi: On July 14, the Delhi High Court will hear 20 cases submitted by rare disease patients on Indian unity.
Patients and supporters they hope that they will get the date in which the government will be able to regulate a digital crowdfunding platform for rare disease patients, as promised based on the national policy of rare diseases notified on March 31 this year.
In a statement dated January 22, the Ministry of Health assumes the policy shows that “digital platforms are likely to operate at 31.3,2021”.
But more than 100 days later still not ready.
In another statement, he said the crowdfunding platform setting was postponed because of a pandemic.
Advocates of patients said they were disappointed by the Ministry’s response.
“Patients who meet the requirements, most children have waited a long time to get support to save life from the government,” said Manjit Singh, National President of Lisosom storage disorders.
They have pinned their hopes at the July 14 trial in court.
Patient rare disease hopes in Delhi HC
