Healthcare leaders call for a national patient charter
Gaps in patient representation, access to high-cost therapies and disability-accessible healthcare emerged as key concerns at a…
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Browsing Tag
spinal muscular atrophy
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…
Health Ministry considering setting up Technical Expert Group on Spinal Muscular Atrophy
The conference hosted two symposiums with 12-15 sessions each for patients and families as well as policymakers, clinicians,…
SMArtCon2024 to focus on building a sustainable rare-disease ecosystem
It aims to bring together patients, caregivers, clinicians, researchers, and therapists to share insights about building a…
Early diagnosis is key in managing spinal muscular atrophy for patients’ lives
Dr Siddharth Shah, Consultant Paediatric Neurologist & Epileptologist, RICN, Ahmedabad explains that newborn screening serves…
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EMA grants conditional marketing authorisation in EU for gene therapy Zolgensma
To treat babies, young children with spinal muscular atrophy