Crowd funding platform for rare diseases treatment live, Centre tells High Court
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Portal has eight registered hospitals, 40 patients and ₹3,73,300 received as donations.
The Centre on Wednesday informed the Delhi High Court that it has made operational a digital platform for crowd funding of expensive medicines and treatment for rare diseases.
Justice Rekha Palli, while appreciating the work done by the government, asked it to update the portal on a regular basis and to take steps for wide publicity for it. It also asked the government to include names of applicants on the portal.
On July 14, Justice Palli had cautioned the government of “wilful non-compliance” if it failed to make the platform operational.
Additional Solicitor General Chetan Sharma, representing the Centre, said rarediseases.aardeesoft.com has become operational. As of Wednesday, it had eight registered hospitals, 40 patients and ₹3,73,300 received as donations.
The High Court was hearing petitions filed by patients suffering from rare diseases such as Duchenne Muscular Dystrophy (DMD) and Hunter’s syndromes seeking direction to the government to provide them uninterrupted free treatment in view of the exorbitant cost of treatment.
The DMD causes progressive muscle degeneration and weakness. The Hunter’s syndromes is a rare disease passed on in families. It mostly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.
Earlier this year, the High Court had asked the Centre to finalise and notify the National Health Policy for Rare Diseases by March 31 and make operational provision of crowd-funding envisaged under the law.
The policy has a section where the government proposed the crowd-funding. It says since the government cannot fully finance the treatment in certain cases, the gap can be filled by seeking donations from prospective individuals or corporate donors.
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