The Union Government has set up eight centres of excellence to treat those diagnosed with rare diseases such as thalassemia, haemophilia, and sickle cell anaemia. There is also a Central portal for crowd funding and voluntary donations.
For patients from Kerala, Bengaluru-based Indira Gandhi Institute of Child Health (IGICH) will be the nearest such centre. The Centre for DNA Fingerprinting and Diagnostics with the Nizam’s Institute of Medical Sciences, Hyderabad, too has a similar facility.
Manish Raj, Under Secretary, Ministry of Health and Family Welfare, conveyed this to Kareem Karassery, general convener, Blood Patients Protection Council, recently. It was in response to a memorandum submitted by Mr. Karassery to then Union Minister for Health and Family Welfare Harsh Vardhan on December 12 last year, to mark Universal Health Coverage Day.
In the memorandum, the council had pointed out that though there were many health insurance schemes at various levels, rare disease patients were excluded from their purview. As the treatment costs are not affordable, those diagnosed with thalassaemia, haemophilia, and sickle cell anaemia had been facing difficulties. Many youngsters are succumbing to these diseases, as they are denied life-saving drugs and proper expert care. The council also sought free treatment for rare disease patients.
Mr. Raj said in the response that the Ministry had framed a National Policy for Rare Diseases, 2021, for such patients. The eight centres are premier tertiary-level Government hospitals which will have facilities for diagnosis, prevention and treatment of rare diseases. The digital portal for crowd funding and voluntary donations for rare disease patients can be accessed through https://rarediseases.nhp.gov.in .
Sources said it could formalise voluntary financial help to people in need of help. Unscrupulous elements are found to make financial gains posing as charity organisations and collecting funds from people. Patients can approach the nearby centre of excellence for treatment, assess the situation and register with the portal to get assistance.
