BharathMD Foundation holds muscular dystrophy awareness summit in Hyderabad
Hyderabad: The BharathMD Foundation organised a national muscular dystrophy awareness summit, Ojas 2026, at the Integrated Command and Control Centre (ICCC) in Banjara Hills on Saturday. The event called for early genetic diagnosis, coordinated medical treatment and stronger government policies for children with rare genetic disorders.
Hyderabad Police Commissioner VC Sajjanar attended as chief guest and distributed specialised wheelchairs to several children with muscular dystrophy.
The summit brought together medical specialists, geneticists, policymakers, corporate representatives, media professionals and families affected by Duchenne muscular dystrophy (DMD). More than 60 children and their caregivers participated in the programme.
The parent-led foundation organised the event to improve access to comprehensive healthcare and support dignified living for affected children and their families.
Muscular dystrophy awareness summit highlights need for integrated medical care
Addressing the gathering, Commissioner Sajjanar commended the BharathMD Foundation for bringing together professionals from different sectors to support affected families. He also acknowledged the difficulties faced by parents caring for children with progressive muscle degeneration.
Sajjanar said raising children required considerable responsibility. However, parents of children with muscular dystrophy faced additional emotional and physical challenges as their children’s muscles progressively weakened.
He praised their patience, sacrifices and determination to provide continuous care despite the difficulties associated with the condition. The commissioner stressed that families should not have to manage complex genetic disorders without coordinated medical support.
He called for specialists from neurology, paediatrics, cardiology, pulmonology, physiotherapy and genetics to work together under a common healthcare framework. According to Sajjanar, parents currently faced considerable hardship while taking children in wheelchairs to different hospitals for specialist consultations.
He suggested establishing integrated medical facilities where families could access multiple specialists at one location. Such an arrangement, he said, would reduce physical strain and emotional distress among caregivers.
Sajjanar also expressed satisfaction over the participation of 60 children in the programme. During the event, he distributed specialised wheelchairs to several children on the stage.
He described the wheelchairs as important mobility aids that could improve children’s independence, confidence and ability to move around. The commissioner further said public safety responsibilities extended beyond crime prevention.
He stressed the importance of supporting vulnerable communities and creating an environment where children with special needs could live without fear or discrimination. He also called for greater social acceptance and dignity for children living with disabilities.
Muscular dystrophy awareness summit calls for Telangana rare disease policy
Dr Santosh Kumar Kraleti, a member of the National Medical Commission (NMC) and chief adviser to the BharathMD Foundation, delivered the keynote address. He called for stronger government policies to establish a sustainable and integrated healthcare system for rare diseases across India.
Kraleti urged the Telangana government to formulate a comprehensive State Rare Disease Policy. He said the proposed policy should address early genetic diagnosis, affordable treatment, comprehensive medical care and rehabilitation services.
He also suggested that Telangana could establish a model for other states by introducing an integrated policy framework. During the programme, Kraleti released the Telugu translation of the Duchenne Muscular Dystrophy Care Guide.
The publication aims to help affected families understand the symptoms of the disorder, home-based care requirements, emergency treatment and recommended exercises. He said providing medical information in regional languages would help parents and caregivers better understand the condition and its management.
The initiative also sought to improve access to practical medical guidance among Telugu-speaking families. BharathMD Foundation founder Murali outlined the organisation’s activities and future plans during the muscular dystrophy awareness summit.
He said parents of affected children established the foundation in 2022 to address challenges associated with neuromuscular disorders. Murali explained that the organisation worked around four pillars: prevention, management, care and cure.
He identified the establishment of 100 neuromuscular clinics across India as the foundation’s principal objective. The proposed clinics would form part of its efforts to strengthen healthcare support for individuals affected by muscular dystrophy and related conditions.
The summit also featured discussions on genetic testing, counselling, multidisciplinary treatment, emerging medical technologies and resource mobilisation. Dr B Vijayalakshmi and Dr Giriraj Ratan Chandak addressed issues related to genetic testing and counselling.
Dr Lokesh Lingappa discussed multidisciplinary paediatric treatment approaches for children affected by neuromuscular disorders. Meanwhile, Dr Suresh B Poda spoke about advanced technologies relevant to medical care and disease management.
Dr Raghu V Malapaka addressed resource mobilisation and the need to strengthen support systems for affected families. Corporate representatives also addressed the role of private organisations in supporting children with muscular dystrophy.
EY Managing Partner Jayesh Sanghvi urged companies to allocate corporate social responsibility (CSR) funds to initiatives benefiting affected families. He called for greater corporate participation in programmes addressing healthcare and support requirements.
Signature Studios Managing Director Mahendra Kumar suggested expanding the use of digital media to improve public awareness. He highlighted the importance of reaching wider audiences with information about muscular dystrophy and the challenges faced by affected families.
Participants also stressed the need for cooperation among government agencies, healthcare professionals, corporate organisations and civil society. The discussions focused on improving access to healthcare services, assistive devices and support facilities for children with muscular dystrophy.
Speakers emphasised that meaningful improvements in the lives of affected families depended on the availability and accessibility of essential services. They called for coordinated efforts to ensure that individuals with muscular dystrophy could live with dignity and enjoy equal opportunities.
The programme concluded with an appeal for sustained cooperation among stakeholders to strengthen medical care, rehabilitation and social support for affected families. For further information: BharathMD Foundation (BMDF) can be contacted at +91 96424 11227, through its website www.bharathmd.org, or by email at contact@bharathmd.org.