Minister of Health Veen George called on all parties involved in rare diseases to develop mechanisms of sustainable financing, so that every child can offer their own property in care and access and justice.
On Saturday, national research and therapeutic conference on the backbone muscle atrophy (Smart Con 2025), organized by the Indian Cure SMA Foundation, the National Health Mission and various other parties, is inaugurated here.
Mrs. George said that a combination of science, politics and compassion tried to create a model in the management of rare diseases. Despite limited sources, the state reaffirmed its collective commitment to patients and families fighting with rare diseases.
Through Keral United against rare diseases (Kare), the state has created a coordinated mechanism that brings together government, health institutions and patient and support groups to ensure early diagnosis, counseling, psychosocial and rehabilitation support for families.
Early diagnosis
When the state acknowledged the importance of early diagnosis, it was in the process of expanding its screening program to cover multiple genetic disorders for which treatment options were available, said Mrs. George.
In children who have already diagnosed some rare disorder, multidisciplinary care has been offered through medical faculties and district timely intervention centers, which included neurology, physiotherapy, lifmology, nutrition and genetic counseling.
The Minister said that the state cooperates with national and global partners to mobilize financing support and access to life -saving therapies, allowing several children to receive expensive medical treatments that would otherwise be beyond their reach.
VK Paul, a member, Niti Aayog, who joined the online conference, said that the Ministries of Health and Science and Technology were determined to find an optimal and permanent solution for SMA. The research and development division of many industrial houses was in the process of bringing many innovative therapies into the country and the scenario was quite optimistic. He said that everyday challenges facing families with SMA patients were deep and that more attention was needed about other aspects of care such as supporting systems for families and nutrition, so children with SMA got high quality care
Hundreds of delegates, including neurologists, pediatricians, genetic experts, groups for the defense of the patient SMA, conduct two days.
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Published – August 23 2025 20:52
