BharathMD Foundation organised ‘OJAS 2026’, a national awareness programme on muscular dystrophy, at the Integrated Command and Control Centre (ICCC), Banjara Hills, Hyderabad, bringing together medical experts, policymakers, corporate representatives, media professionals, affected children and their families.
The summit focused on improving early diagnosis, medical care, rehabilitation and social support for individuals living with Duchenne Muscular Dystrophy (DMD) and other rare muscular dystrophies.
More than 60 affected children and their caregivers participated in the programme, which aimed to strengthen awareness and encourage coordinated efforts to support families dealing with these conditions.
Hyderabad Police Commissioner Highlights Caregivers Challenges
- Hyderabad City Police Commissioner V. C. Sajjanar, IPS, attended the programme as the Chief Guest and appreciated BharathMD Foundation for bringing different stakeholders together for the cause.
- He recognised the dedication and emotional challenges faced by parents and caregivers of children living with progressive muscular conditions.
- Emphasising the need for an integrated healthcare approach, he called for better coordination among specialists in neurology, paediatrics, cardiology, pulmonology, physiotherapy and genetics.
- During the programme, specialised wheelchairs were distributed to several children. He highlighted the importance of assistive equipment in improving mobility, independence and self confidence.
Warning Against Fake Medical Treatments and Online Frauds
- Commissioner Sajjanar cautioned families against unscientific treatments, fraudulent miracle-cure claims and fake online crowdfunding campaigns that exploit the difficulties faced by parents.
- He advised families to seek medical treatment only under the guidance of qualified specialists and urged the public to verify charitable appeals before making donations.
- He also assured that the police department would support families facing exploitation, fraud or harassment. Citizens were advised to contact the Cyber Fraud Helpline 1930 or Dial 100/112 for assistance.
Experts Call for Telangana Rare Disease Policy
Delivering the keynote address, Dr. Santhosh Kumar Kraleti, Member of the National Medical Commission and Chief Advisor to BharathMD Foundation, stressed the need for stronger institutional support for people affected by rare diseases.
He urged the Telangana Government to develop a comprehensive State Rare Disease Policy and implementation roadmap focusing on:
- Early diagnosis and screening.
- Accessible medical treatment and therapies.
- Comprehensive rehabilitation services.
- Better healthcare support for affected families.
On the occasion, he officially released the Telugu version of the DMD Care Guide, intended to provide Telugu-speaking families with accessible medical information, clinical care guidance and home-management strategies.
Foundation Plans 100 Neuromuscular Clinics Across India
- BharathMD Foundation, established in 2022 by parents navigating the challenges of muscular dystrophy, aims to establish 100 Neuromuscular Clinics (NMCs) across India.
- Founder and organiser Murali outlined the foundation’s vision based on four key pillars: Prevention, Management, Care and Cure.
- The summit also featured expert sessions on genetic screening, counselling, multidisciplinary paediatric care, emerging therapeutic technologies and resource mobilisation for rare diseases.
- Medical specialists Dr. B. Vijaya Lakshmi, Dr. Giriraj Ratan Chandak, Dr. Lokesh Lingappa, Dr. Suresh B. Poda and Dr. Raghu V. Malapaka shared their expertise.
- Corporate and media perspectives were presented by Jayesh Sanghvi, Managing Partner at EY, who highlighted the importance of sustained Corporate Social Responsibility (CSR) investments in rare disease diagnostic infrastructure, and Mahindra Kumar, Managing Director of Signature Studios, who discussed the role of digital media in building public awareness and empathy.
Call for Collective Action
- The programme concluded with a call for government departments, healthcare professionals, corporate organisations and civil society to work together to improve the lives of people affected by muscular dystrophy.
- Under its guiding motto, “Access Changes Lives,” BharathMD Foundation emphasised the importance of accessible healthcare, early intervention, rehabilitation and social dignity for affected individuals and their families.
- The summit highlighted the need to move beyond awareness towards stronger healthcare systems and sustained support for India’s rare disease community.
For more information:
- Website: www.bharathmd.org
- Phone: +91 96424 11227
- Email: contact@bharathmd.org
