The Department of Health and Family Welfare has launched a Digital Portal for Crowd Funding and Voluntary Donations for Patients of Rare Diseases in accordance with the mandate of the National Policy for Rare Diseases (NPRD), 2021. The Digital Portal may be accessed through https://rarediseases.nhp.gov.in/ . Ministry of Health and Family Welfare has written to Department of Revenue for registration of Crowd Funding Portal for rare disease under Section 80G of the Income Tax Act.
Financial assistance in respect of 120 patients has been released for treatment of patients suffering from rare diseases in accordance with the provisions of the NPRD, 2021. Centres of Excellence (CoEs) have option to get financial assistance from other agencies/drugs manufacturers/Corporate sector under Corporate Social Responsibility scheme by signing of Memorandum of Understanding (MoU) with them. 11 (Eleven) CoEs have been identified till date.
The Union Minister of State for Health and Family Welfare, Dr. Bharati Pravin Pawar stated this in a written reply in the Lok Sabha today.