The long wait and the struggle of families battling NF1- A rare form of Neurofibromatosis
Dr Ratna Devi, CEO, DakshamA Health; Director, PAIR (Patient Academy for Innovation and Research); and Steering Committee Member…
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Browsing Tag
Rare Diseases Day
Supreme Court order risks interrupting treatment for young woman with Spinal Muscular Atrophy
In her writ petition, Seba called for the continuation of her treatment with risdiplam beyond the Rs 50 lakh cap under the…
How patient engagement is crucial in rare disease management
Dr Atul Mohan Kochhar, CEO, NABH highlights that he last two decades have seen the emergence of new therapies for a few rare…
ORDI to organise 8th edition of RaceFor7 to raise awareness for the rare disease community
Besides Bengaluru, the event is being held in 12 other cities nationally including Davangere, Mysuru, Ahmedabad, Mumbai, Kochi,…
1 in 10 patients receive disease-specific treatment in India
There is lack of awareness about rare diseases in India which makes it imperative to come up with comprehensive preventive…