The Centre has told the Delhi High Court that it did not allocate an initial corpus for treatment of life-threatening diseases under the National Policy on Treatment of Rare Diseases...
A year after first announcing that a special fund of Rs 100 crore was being set up to help children suffering from rare diseases, the Centre has now taken a...
A petition on behalf of families of patients of rare diseases has sought government aid for treatment. It states that the ESI has the obligation not only under the Employees’...
By Jung Hae-myoung Starting next year, more patients battling rare diseases will pay less for their medical expenses, as 100 disorders have been newly added to the government’s subsidy list,...
Farber disease is a rare, autosomal-recessive disorder caused by a mutation in the acid ceramidase gene, which leads to accumulation of sphingolipids in various tissues.1 It typically presents with a combination...
Chinese scientist He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong on November 28, 2018. The announcement of the birth of babies with edited...
The ministry of health and family welfare that is getting continuous requests from patient organizations for funds has reached out to the finance ministry seeking financial help. New Delhi: Several...
In 2012, Ethan Perlstein challenged the academic status quo. Now as CEO of the start-up Perlara, can he do the same for the biotech industry? In 2012, molecular biologist Ethan...
Today, more than 5,000 diseases are catalogued as “rare” by the scientific community, so long as they affect small sections of population. The drugs used for the treatment of rare...
Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.
