Our hope is that by the end of August, people will read these stories and come away with a better understanding of what life with SMA is about.
We released our first annual book “The Journey…” Edition 1 on 28th February 2020 – International Rare Disease Day. It reflects several activities that we undertook in 2019 illustrating our commitment to bring the drug for SMA to India with continuous lobbying with the government and pharma companies and our efforts in creating more awareness among the SMA community about the multidisciplinary management of the disease.
We have published and distributed many booklets, brochures, and leaflets designed to help in the better understanding of the underlying causes, symptoms, and progression of the different forms of SMA among our members, doctors, and the public.
Online SMA communities play a crucial role in raising awareness and exchanging ideas and experiences with others who have SMA and thus help and support one another. We are active on Facebook, Twitter, Instagram, and YouTube.
We have conducted webinars on various topics for raising awareness among the SMA community in India.
Cure SMA India participated in Race for Seven, an awareness run organized by the Organization for Rare Diseases India (ORDI) in 2019 and 2020 in various cities across India.