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Lobbying with Govt

28 AUG 2019

Met the Chief Economic Advisor of India to discuss on funding for SMA treatment. Attended by Archana Panda, Alka Vij, and Dhruv Malhotra.

13 AUG 2019

Met Dr. Harsh Vardhan, Minister of Health and Family Welfare, Government of India. Attended by Alka Vij, Archana Panda, and Dhruv Malhotra.

05 AUG 2019

Meeting with Director General controller of India. Attended by Alpana Sharma, Shashee B. Vij, Deepti Jagota, and Alka Vij. The urgent need to get the SMA drug to India was explained.

02 JUL 2019

Met Dr. V K Paul, member of NITI AAYOG and discussed the availability, affordability, and accessibility of SMA treatment in India. Attended by Archana Panda and Arnob Saha.

19 JUN 2019

Met the Insurance Regulatory and Development Authority of India (IRDAI) in Hyderabad to discuss possibilities of insurance coverage for SMA treatment. Attended by Archana Panda, Arnob Saha, and Srilakshmi Nalam.

27 May 2019

Participated in round table discussion on the National Rare Disease Policy organized by Health Issue India. Attended by Archana Panda. Cure SMA India emphasized on the need for a sustainable economic funding model, to establish medical protocols for all rare diseases, significance of genetic screening and counselling for prevention of rare diseases.

20 FEB 2019

Participated in a stakeholder meeting conducted by Preeti Sudan, Health Secretary, Ministry of Health and Family Welfare. Attended by Archana Panda and Alka Vij. Cure SMA Foundation of India gave several inputs to make Rare Disease Policy sustainable & effective.

17 JAN 2017

Archana Panda & SMA Warrior Anushka Panda- met honorable Health Minister Shri J.P.Naddaji- to discuss about Spinal Muscular Atrophy.