The Central Government on Wednesday apprised the Delhi High Court that they have set up an online crowdfunding platform to collect funds for the treatment of children suffering with rare diseases at rarediseases.nhp.gov.in.
The Single-Judge Bench of Justice Rekha Palli appreciated the efforts made by the Central Government and asked them to take further steps in this regard, so that the creation of this platform is beneficial to children suffering from rare diseases.
The petition has been filed in connection with children suffering from a rare disease called Duchenne Muscular Dystrophy (DMD), seeking direction for the government to ensure that these children are provided free treatment for DMD, as the drug is exorbitantly expensive and not affordable by the petitioners.
Additional Solicitor General of India Chetan Sharma further informed the court that the Central government is making serious efforts to motivate Public Sector Undertakings and other corporate organisations to make contributions to the platform.
Advocate Rahul Malhotra informed the court that the platform was floated two days ago and the list of patients on the website did not include any of the petitioners in the connected matters. Advocate Ashok Agarwal filed a note containing suggestions in consultation with the Counsel appearing on behalf of the petitioners in all the connected matters.
Mr Sharma prayed for time to examine the note and file a short response. The court granted him six weeks to file the response and also informed him that the court expected the Central Government to update the portal on a regular basis and update the details of all the petitioners in the connected matters.
The court, on the previous date, had directed the Union Ministry for Health and Family Welfare to immediately launch a crowdfunding platform for collection of funds for children suffering from rare diseases. The bench listed the matter for further hearing on September 20.