Cure SMA Foundation of India

What Cure SMA Foundation of India does

Cure SMA Foundation of India is a patient advocacy non-profit organization founded in January 2014 by parents of children with Spinal Muscular Atrophy (SMA), a rare genetic neuromuscular disease. Originally established as Families of Spinal Muscular Atrophy India (FSMA) and later rebranded to Cure SMA India, the foundation operates as the first and only dedicated SMA patient advocacy organization in India. It serves SMA patients and families through regional chapters in Gurgaon (headquarters), Kolkata, Delhi NCR, Bangalore, and Cochin, providing free services nationwide across a community that has grown from 10 founding members to over 200 member families within three years, addressing an estimated 3–4 lakh affected children in India.

The foundation delivers a portfolio of community-based services including patient registration and community building, SMA awareness programs (webinars, conferences, social media), multidisciplinary clinic coordination in partnership with hospitals such as Peerless Hospital (Kolkata), Ganga Ram Hospital (Delhi NCR), Bangalore Baptist Hospital, and PGI (Chandigarh), government advocacy with NITI AAYOG and the Ministry of Health, financial support through crowdfunding campaigns, assistive device provision, family counseling, and development of standard-of-care protocols. The foundation has no proprietary technology platform; its "product" is human-coordinated care delivery, advocacy, and awareness. The organization runs a WordPress-based website (www.curesmaindia.org), maintains active social media channels (Facebook, Twitter, Instagram, YouTube), and hosts webinars and conferences as primary engagement channels.

The foundation is funded entirely through donations, crowdfunding, and fundraising — registered under sections 12AA and 80G of India's Income Tax Act for tax-exempt donations — with no disclosed revenue, no headcount disclosure, and no external investors. All services to SMA patients are provided free of charge. Notable milestones include fast-tracking the approval of Evrysdi (Risdiplam) in collaboration with Roche (the first and only SMA treatment approved in India), establishing SMA clinics across four cities, securing a Delhi High Court order mandating government funding for SMA Type 1 children, and hosting the First National Conference on SMA. The organization has no patents, no AI/ML capabilities, no software products, and no recurring revenue streams.

Name

Cure SMA Foundation of India

Legal name

Cure SMA Foundation of India

Website

https://curesmaindia.org

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

Cure SMA Foundation of India is a parent-founded, donation-funded patient advocacy non-profit (est. 2014) providing free multidisciplinary care coordination, treatment-access advocacy, counseling, and assistive-device support to Spinal Muscular Atrophy patients and families across India.

Ownership category

akta.pro rank

Headquarters

HQ city

Gurugram

HQ country

India

HQ region

Asia

Offices5 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Infrastructure, Supply Chain, Others

Revenue model

1. Donations and Fundraising: The foundation raises funds through donations from individuals, corporations, and supporters. They conduct annual fundraisers, crowdfunding campaigns, and awareness activities to generate funds for SMA patients.
2. Tax-Exempt Donation Structure: Registered NGO approved under section 80G of the Income Tax Act, enabling donors to claim tax exemptions on contributions.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

Cure SMA Foundation of India is a registered nonprofit patient advocacy organization that provides free services to Spinal Muscular Atrophy (SMA) patients and families in India, including multidisciplinary SMA clinic coordination across four cities, treatment access advocacy, financial support for expensive therapies and assistive devices, counseling, and awareness programs. All services are delivered free of charge and funded through donations, crowdfunding campaigns, and sponsorships.

Product overview

Cure SMA Foundation of India is a patient advocacy and support organization, not a technology product company. It does not offer software products or technology solutions. The organization's services include patient registration and community building, SMA awareness and education programs, multidisciplinary healthcare clinic coordination, government advocacy for treatment access, financial support through crowdfunding campaigns, provision of assistive devices, counseling services, and development of care protocols. The main offerings are advocacy services, patient support programs, awareness campaigns, and healthcare coordination rather than commercial products or technology platforms.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Registration Services A registration platform for SMA patients to join the Cure SMA India community, providing details about their location, diagnosis, and contact information for support and advocacy purposes.
• SMA Multidisciplinary Clinics Specialized quarterly clinics providing coordinated care from neurologists, developmental pediatricians, orthopedicians, spine surgeons, gastroenterologists, and physiotherapists. Currently operating in Kolkata (Peerless Hospital), Delhi (Ganga Ram Hospital), Cochin (Aster MIMS Calicut), and Chandigarh (PGI).
• SMA Awareness Programs Educational and awareness initiatives including webinars, seminars, conferences, and social media campaigns to spread knowledge about Spinal Muscular Atrophy among families, healthcare providers, and the general public.
• Government Advocacy Program Lobbying efforts with government officials including meetings with the Minister of Health, NITI AAYOG members, and regulatory authorities (DCGI, CDSCO) to improve access to SMA treatments and affordable medications in India.
• Patient Financial Support Program Crowdfunding campaigns and fundraising initiatives to provide financial assistance for expensive SMA treatments, assistive devices, hospitalization expenses, and rehabilitation services to economically weak patients.
• Assistive Devices Program Provision of powered wheelchairs, orthotic devices, braces, standing frames, and other mobility aids for patients requiring support due to muscle weakness caused by SMA.
• Counseling Services Emotional and psychological support for families of SMA patients, helping them cope with diagnosis, adjust expectations, and connect with similar families within the SMA community.
• SMA Protocols and Guidelines Development and dissemination of standard-of-care protocols for SMA management including physiotherapy, nutrition guidance, respiratory care, and orthopedic care guidelines.
• Fundraising Campaigns Crowdfunding initiatives such as 'I have a Dream', 'SMArt Vs Artist', and 'I want to protect my country' to raise funds for SMA treatments and patient support.
• SMA Awareness Month Activities Annual awareness initiatives recognizing August as Spinal Muscular Atrophy Awareness Month, featuring webinars, virtual events, art competitions, and community engagement activities.

Quantifiable outcome

• Evrysdi (Risdiplam) became the first and only approved SMA treatment available in India
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered minor and core.

• ORDI (International Conference on Rare and Undiagnosed Diseases)minorGTM or Marketing Partner · 13 April 2020Archana Panda participated as a panelist in the International Conference on Rare and Undiagnosed Diseases organized by ORDI at Sir Ganga Ram Hospital.
• Aster MIMS CalicutminorStrategic or Co-development Partner · 31 August 2019Conducted the 1st SMA Awareness Programme at Aster MIMS Calicut. Future plans for multidisciplinary management sessions and awareness programs.
• Roche PharmaceuticalscoreStrategic or Co-development Partner · 1 August 2019Roche invited Cure SMA India to participate in SMA awareness month activities. Alpana Sharma was invited as Guest Faculty to speak about patient empowerment at Roche's Annual Function. Discussed accessibility of Risdiplam.
• Peerless Hospital and B.K. Roy Research CentrecoreStrategic or Co-development Partner · 9 June 2019Collaboration to organize the First National Conference on Spinal Muscular Atrophy (SMA) at Science City, Kolkata. Peerless Hospital has been running an SMA Clinic for over a year where patients are treated jointly by Paediatricians, Pulmonologists, Neurologists and Spinal Surgeons.
• Roche IndiacoreStrategic or Co-development Partner · 1 January 2019Cure SMA India worked with Roche, patient community, HCP community, and regulators to fast-track Evrysdi (Risdiplam) approval in India. Multiple meetings held to advocate for patient access to SMA treatments. Roche invited Cure SMA India to participate in SMA awareness month activities.
• Roche Pharmaceuticals (patient empowerment collaboration)coreStrategic or Co-development Partner · 1 October 2018Alpana Sharma was invited as Guest Faculty to speak about patient Empowerment at the Annual Function of Roche Pharmaceuticals. Shared about inception of Cure SMA India and importance of Self Advocacy in rare diseases.
• Organization for Rare Diseases India (ORDI)coreStrategic or Co-development PartnerCure SMA Foundation of India collaborates with ORDI to improve standards of care and quality of life for affected children and families. Participated together in Race for 7 awareness runs and Rare Disease Day activities.
• Bangalore Baptist Hospital (BBH)coreStrategic or Co-development PartnerCollaboration with BBH on improving standards of care (SOC) and quality of life for SMA patients and families. BBH involved in awareness seminars and care protocol development.
• Kare Prosthetics and OrthoticsminorImplementation/ SI/ Consulting PartnerCure SMA Foundation of India Kolkata chapter collaborated with Kare Prosthetics and Orthotics (Bangalore) to organize a Spinal Orthoses Workshop in Kolkata to address scoliosis complications in SMA patients.
• SMA EuropeminorStrategic or Co-development PartnerPartnership with European SMA patient advocacy network for knowledge sharing and international collaboration on SMA awareness and treatment access.
• SRCC HospitalminorStrategic or Co-development PartnerCollaborated with SRCC Hospital on the SMART Webinar series covering SMA treatment modalities, recent therapies, and multidisciplinary clinic role.
• Ganga Ram HospitalcoreStrategic or Co-development PartnerFirst SMA Clinic in Delhi NCR established at Ganga Ram Hospital, providing multidisciplinary care access to patients in northern India.

Scale indicators3 records

Recent moves8 records

Expansion highlights5 records

Broad incumbents

• NORD (National Organization for Rare Disorders): US umbrella rare-disease advocacy organization analogous to ORDI. Comparable scope (policy advocacy, patient support programs, conferences, awareness campaigns) at much larger scale and as a broader portfolio player versus a single-disease specialist.
• Cure SMA (United States): The largest US-based SMA patient advocacy organization that Cure SMA India's founder Alpana Sharma drew inspiration from at its 2014 annual conference. Comparable SMA-specific mission, but operating at significantly greater scale with established research-grant programs.
• EURORDIS – Rare Diseases Europe: European-level rare-disease alliance representing 1,000+ patient organizations. Operates in adjacent international advocacy and policy space relevant to Cure SMA India's SMA Europe partnership and cross-border treatment-access work.
• Rare Diseases International: Global alliance of rare-disease patient organizations. Comparable international advocacy and rare-disease policy engagement, complementing Cure SMA India's domestic advocacy with cross-border visibility and policy alignment.

Direct peers

• Indian Association for Muscular Dystrophy: Indian patient advocacy organization for muscular dystrophy and related neuromuscular disorders. Closely comparable target population, care-coordination challenges, and advocacy model in the Indian neuromuscular patient-advocacy space.
• Organization for Rare Diseases India (ORDI): India's leading umbrella rare-disease patient advocacy organization. Direct peer: Cure SMA India is an active ORDI partner, co-hosts the Race for 7 awareness runs, and participates in ORDI's Rare Disease Day and international conferences.
• Lysosomal Storage Disorders Society of India (LSDSS): Indian patient advocacy nonprofit for a family of rare genetic disorders. Comparable model: free patient services, hospital-based multidisciplinary clinics, government advocacy for treatment access and rare-disease policy, and 80G-registered fundraising.

Regional players

• SMA Europe: European federation of national SMA patient organizations. Listed partner on Cure SMA India's site; comparable mission (SMA-specific advocacy, treatment access, clinic development) but operating across European member associations rather than a single country.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/curesmaindia
• YouTubeyoutube.com/channel/UCnIW7xcf9sw8jQlKodGlamw
• Facebookfacebook.com/curesmaindia
• Instagraminstagram.com/curesmaindia
• LinkedInlinkedin.com/company/curesmaindia

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Cure SMA Foundation of India