Conferences/Seminars

National FGD on empowerment of women with disability was conducted in Delhi. Attended by Tanvi Vij.

An awareness seminar was held to discuss the standard of care for SMA in collaboration with Bangalore Baptist Hospital (BBH) and Organization for Rare Diseases India (ORDI). The main aim is to disseminate protocols and socs for SMA among the medical fraternity & SMA families.
The world of SMA and genetic diseases is exploding with a wide array of possible newer therapies and options and we attempt this workshop as a preparatory tool towards this.

Participated in the KAN Monsoon Summit at Kochi, Kerala which included a meeting with the world-renowned pediatric neurologist and SMA expert, Dr. Enrico Bertini. Attended by Dr. Razeena, Tintu K. John, and Solomon Raphel from Kerala.
Dr. Enrico shared his vast experience in the management of SMA
patients with special emphasis for us on how to guide and empower an
SMA patient group. He advised on the importance of lobbying with the govt. and Pharma, setting national and international collaborations, and raising funds for SMA care and research.

Met Arjit Pati and his team from Cognizant Foundation in Peerless Hospital, Kolkata along with Dr. Papiya Khawash. Attended by Archana Panda and Moumita Ghosh.

Cure SMA Foundation of India along with Peerless Hospital and B. K. Roy Research Centre, Kolkata, organized the First National Conference on Spinal Muscular Atrophy (SMA) on the 9th of June 2019 at Science City, Kolkata.
This conference is aimed at sensitizing the doctors and public alike as SMA can no longer be considered as an incurable disease and new treatments available should be made accessible to these children.
The conference is aimed at Generalists, Specialists and Postgraduate trainees and parents of children with SMA to discuss current evidence-based treatment for Spinal Muscular Atrophy and new areas of research in SMA and efficacy of drugs available.

Archana Panda was invited as a speaker to represent the rare disease community in an event organized by MSF Foundation in New Delhi.

Shashee B Vij parcipated in PAG Leaders Meet organized by ORDI & Global Genes.

Archana Panda participated as a panelist in the International Conference on Rare and Undiagnosed Diseases organized by the ORDI at Sir Ganga Ram Hospital.

Participated in the stakeholders meeting organized by the National Pharmaceutical Pricing Authority in New Delhi. Attended by Alka Vij.

Participated in a conference organized by IAPG. Attended by Shashee B. Vij and Niharika Vij.

Participated in Bio Asia Conference in Hyderabad. Attended by Srilakshmi Nalam, Arnob Saha, Satish, Karimullah, Vinay, and Karim Hasnani.

Participated in SUMMIT 2019 organized by Novartis. Attended by Shashee B. Vij and Archana Panda.

Participated in the International Child Neurology Conference. Attended by Alpana Sharma.

Met Dr. Soumya Swaminathan in the first World Congress on Accessibility to Medical Products jointly organized by the WHO and the Ministry of Health and Family Welfare.

Alpana Sharma was invited as Guest Faculty to speak about patient Empowerment at the Annual Function of Roche Pharmaceuticals. She shared about inception of Cure SMA India, stories of stellar performances of our SMA patients and the fact that with each passing day the disease is spreading like poison in their bodies. Also spoke about importance of Self Advocacy especially in rare diseases as it affects the minuscule population. Roche assured that they are willing to help the SMA Patients by ensuring accessibility of Risdiplam, when it is released in market.

Roche invited Cure SMA India in the SMA awareness month to learn about journey with SMA. Founding members from different parts of the country gathered at Mumbai office of Roche for the meeting. Thanks to Alpana Sharma for making this possible through her tireless efforts.

Roche India Team was greatly moved to learn about the spirits of courage shown by the children with SMA and their parents. It was an amazingly enriching session for both Roche and Cure SMA Foundation of India. Great to see Roche Walking the Talk. Thanks Roche team for inviting Cure SMA India to celebrate SMA awareness day at Roche.

Cure SMA India has a second round of meeting at Roche. We presented the case studies of SMA Type 1, Type 2, and Type 3 Patients. We represented patients group perspective sharing the patients’ journey, their challenges, and the achievements despite all the odds. We strongly advocated the need of medicine for all the patients.
Roche India Team was duly impressed to learn that Cure SMA India is continuing to build infrastructure and protocols for SMA Care and bring treatment for SMA patients in India. We would keep putting our best efforts for a positive outcome with Roche.