Advocacy with government, SMA clinics, conferences and awareness work across India.
We are honoured to welcome Manasa Varanasi, Femina Miss India 2020, as the Brand Ambassador of Cure SMA India, raising awareness for Spinal Muscular Atrophy and supporting families across India.
Cure SMA Foundation of India organized a session on SMA support care for parents of children with SMA in collaboration with BLK Super Specialty Hospital, New Delhi. All the doctors from various disciplines shared…
For registeration click below: Ganga Ram Hospital Registration
A multidisciplinary approach is the key element in the management of SMA patients with the input of specialists from different areas of care and intervention Cure SMA India started the concept of SMA clinics to…
Assistive Devices Powered wheelchairs and orthotic devices like braces that are required for dealing with problems caused by muscle weakness are provided for economically weak patients. Sohail Khan received a motorized…
CureSMAIndia announces SMArterTogether initiative. Within this initiative we plan to hold activities on engagement n involvement of SMAWarriors and Caregivers throughout 2021. The first activity under this initiative we…
Scoliosis is an abnormal and progressive curvature of the spine caused by weakness in muscles of the back that support the spine.Patients will require spinal surgery to correct their scoliosis and improve both mobility…
Children with SMA are prone to frequent hospitalizations due to several reasons. Cure SMA gives financial support to people who are economically weak by raising funds. Pawan, a child from economically weak background…
List of documents required for evaluation Inclusion/Exclusion
Spinal muscular atrophy is an inherited disease where there is progressive loss of motor nerve cells in the brainstem and spinal cord that control essential muscle activity such as wa lking,sitting,breathing and even…
Spinal muscular atrophy is a rare, genetic neuromuscular and a progressive disorder. The SMA community officially recognizes August as “Spinal Muscular Atrophy Awareness Month”. During this unusual year, we still worked…
Virtual physiotherapy awareness program by Dr Gaganpreet
SP Jain Institute of Management and Research, Mumbai, in association with Novartis, one of the leading healthcare company has conceived and launched a unique organizational development program “SAKSHAM”, customized for…
Met Sarita Chandra and Tamsi Nayak, FICCI, New Delhi. Attended by Archana
Our campaign on social media was carried out throughout the 31 days of August. There are so many different facets to living with SMA. Scientific fact sheets and a diverse range of stories were put together and shared…
A virtual musical program for the entertainment of the kids and families was organized on 29th August . Children of all ages participated with excitement and sang songs from all languages and made the program a
A webinar was organized on August 28th in association with Aster MIMS hospital, Calicut on multidisciplinary management and awareness sessions for SMA. We had specialist doctors from neurology, orthopedics,…
An art competition was announced to the children on 24th August , which encouraged them to color and draw according to their age group. It helps in building their fine motor skills and promotes their self-esteem and…
At sunset, on August 22nd we held a candle lighting ceremony in remembrance of those who died of SMA, and to honor those living and fighting with it every day. We hope to bring awareness about SMA and unity to the…
An awareness seminar was held to discuss the standard of care for SMA in collaboration with Bangalore Baptist Hospital and Organization for Rare Diseases India . The main aim is to disseminate protocols and socs for SMA…
On the occasion of Independence Day, 15th August , we conducted a virtual fancy dress competition for our SMA warriors. In these Covid and lockdown times, it is especially important for all of us to support our children…
On 9th August , we had a virtual round table discussion on “Universal access to life saving medicines-challenges and solutions” . This was the first multi stakeholder discussion on Spinal Muscular Atrophy in India. This…
8th AUG 2020Webinar on 8th August in association with SRCC Hospital and Roche on “Spinal Muscular Atrophy Reimagined with new Treatment Option” “ . It covered different modalities of treatment and interventions, recent…
The SMA awareness month kicked off with a webinar on Respiratory Care in SMA , on 1st August . Pediatric pulmonologists from Kolkata, Mumbai, Bangalore, and New Delhi participated and spoke on several respiratory issues…
Archana Panda participated as a panelist in the International Conference on Rare and Undiagnosed Diseases organized by the ORDI at Sir Ganga Ram
National FGD on empowerment of women with disability was conducted in Delhi. Attended by Tanvi
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. https://www.facebook.com/curesmaindia/videos/749110955944120/…
Cure SMA Foundation of India, Kolkata chapter in collaboration with Kare Prosthetics and Orthotics, Bangalore organized a Spinal Orthoses Workshop in Kolkata. SCOLIOSIS is a major complication of children with SMA.…
10/1/2019 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…
Organized an SMA Awareness Session and SMA Clinic in collaboration with PGI Chandigarh. A family guidebook, “Care of child with Spinal Muscular Atrophy” prepared by Dr Renu Suthar and team in collaboration with Cure SMA…
8/31/2019 Conducted the 1st SMA Awareness Programme at Aster MIMS Calicut. Enriching informative sessions were delivered by the doctors of the hospital which were very insightful on different
Organized the first SMA Clinic in collaboration with Sir Ganga Ram Hospital in New Delhi. It was inaugurated by Dr S P Byotra, Vice Chairman of the hospital, followed by his keynote address. The welcome address was…
Met the Chief Economic Advisor of India to discuss on funding for SMA treatment. Attended by Archana Panda, Alka Vij, and Dhruv
Met Dr. Harsh Vardhan, Minister of Health and Family Welfare, Government of India. Attended by Alka Vij, Archana Panda, and Dhruv
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
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…
When prayers and efforts come together, humans can fight and win against all odds. CureSMA India is pleased to inform that “Direct Relief” , a US based NGO has initiated SPINRAZA “ Individual Patient Humanitarian Access…
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…
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
Met the Insurance Regulatory and Development Authority of India in Hyderabad to discuss possibilities of insurance coverage for SMA treatment. Attended by Archana Panda, Arnob Saha, and Srilakshmi
Met Arjit Pati and his team from Cognizant Foundation in Peerless Hospital, Kolkata along with Dr. Papiya Khawash. Attended by Archana Panda and Moumita
9th June 2019 Peerless Hospital and B. K. Roy Research Centre along with Cure SMA Foundation of India organises the First National Conference on Spinal Muscular Atrophy on the 9th of June 2019 at Science City, Kolkata.…
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 on the 9th of June 2019 at Science City, Kolkata. This…
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…
4/28/2019 Conducted the first awareness meeting on SMA care and support with a team of doctors, a geneticist, and orthotics, representatives for the parents of kids with SMA in Hyderabad. The sessions were enlightening…
27 APR 2019 Archana Panda was invited as a speaker to represent the rare disease community in an event organized by MSF Foundation in New
Participated in the stakeholders meeting organized by the National Pharmaceutical Pricing Authority in New Delhi. Attended by Alka
17th March,
3rd March
25th Feb to 27th Feb,
Participated in Bio Asia Conference in Hyderabad. Attended by Srilakshmi Nalam, Arnob Saha, Satish, Karimullah, Vinay, and Karim
24th feb,
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…
17th Feb
1st Jan
Participated in a conference organized by IAPG. Attended by Shashee B. Vij and Niharika
Participated in SUMMIT 2019 organized by Novartis. Attended by Shashee B. Vij and Archana
Hello everyone. We are extremely happy n excited to release our first Annual book “The Journey…. CureSMAIndia” Edition 1 on this International Rare Disease Day 2day. We have tried to incorporate most of the work done by…
Shashee B Vij parcipated in PAG Leaders Meet organized by ORDI & Global
Participated in the International Child Neurology Conference. Attended by Alpana
11/1/2018
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…
October 2018 Roche is a global pioneer in pharmaceuticals and diagnostics focused on advancing science to improve people’s lives. Roche is developing a molecule Risdiplam that is helpful in treating Spinal Muscular…
22nd Nov
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
Kolkata chapter of Cure SMA India organizes an SMA Multidisciplinary Clinic every quarter to help optimize day-to-day functions as much as possible to both maintain function and avoid development of things like…
Archana Panda & SMA Warrior Anushka Panda- met honorable Health Minister Shri J.P.Naddaji- to discuss about Spinal Muscular