SMA conference inaugurated in Thiruvananthapuram

Health Minister Veena George has called upon all stakeholders in the area of rare diseases to evolve sustainable financing mechanisms so that equity in care and access and justice can be offered to every child with rare diseases.

She was inaugurating the national Spinal Muscular Atrophy Research and Therapeutic conference (SMArt Con 2025) here on Saturday, organised by Cure SMA Foundation of India, National Health Mission and various other stakeholders.

Ms. George said that by combining science, policy and compassion, Kerala was trying to set a model in the management of rare diseases. Despite limited resources, the State had reaffirmed its collective commitment to patients and families struggling with rare diseases.

Through Kerala United against Rare Diseases (KARE), the State has established a coordinated mechanism that brings together the government, medical institutions and patient and support groups to ensure timely diagnosis, counselling, psychosocial and rehabilitative support to families.

Early diagnosis

Recognising the importance of early diagnosis, the State was in the process of expanding its newborn screening programme to cover more genetic disorders for which treatment options were available, Ms. George said.

For children who are already diagnosed with some rare disorder, multidisciplinary care was being offered through medical colleges and district early intervention centres, involving neurology, physiotherapy, pulmonology, nutrition and genetic counselling.

The Minister said that the State has been working with national and global partners to mobilise funding support and access to life-saving therapies, enabling several children to receive expensive medical treatment that would otherwise have been out of their reach.

V.K. Paul, member, NITI Aayog, who joined the conference online, said that the Ministries of Health and Science and Technology were committed to finding an optimum and permanent solution for SMA. The R&D divisions of many industrial houses were in the process of bringing many innovative therapies to the country and the scenario was quite optimistic. He said that the daily challenges faced by families with SMA patients were profound and that more attention was needed on other aspects of care, such as support systems for families and nutrition so that the children with SMA received high quality of care

Hundreds of delegates, including neurologists, paediatricians, genetic experts, SMA patient advocacy groups are leading the two-day deliberations.