Bangalore Baptist Hospital teams up with Organization for Rare Disease India (ORDI) to fight spinal muscular atrophy. Globally the month of August is commemorated as spinal muscular atrophy awareness month.
SMA, a progressive disease that robs a?ected people of their ability to walk, breathe and swallow. It is the leading cause of inherited fatality in babies and has an incidence of around 1 in 6,000.
Rare diseases like SMA are difficult to handle and live with. The advent of revolutionary newer therapies has changed the lives of many babies and families. But there is still a lot of struggles in accessing the specialized supportive care that goes with this condition. The medications that have spelt new hope are far too often, beyond the reach of most a?ected individuals and families. To make matters worse, specialist expertise is often scarce, making geographic distances that patients have to travel a major obstacle. This makes collaboration the only way of bringing some solace and improving the quality of life, for these children and young people, stated Bangalore Baptist Hospital and ORDI.
“Individuals affected by rare diseases far too often have a long journey towards diagnosis, many that last decades and a lot of them, where the diagnosis is never made even after the individual succumbs. This event is aimed at reducing this gap of delayed and incorrect diagnosis. Neuromuscular disorders especially SMA has seen an explosion of newer drugs and therapies. But they need to reach affected families. Increased awareness of these conditions will help more families avail themselves of these treatments and empower them as well as hopefully, inspire future generations to answer these unanswered and unsolved problems that Individuals affected with rare diseases always face” said Dr. Ann Agnes Mathew, head of neuromuscular services, Bangalore Baptist Hospital.
“SMA patients are fortunate to have 2 types of treatment whereas 95% of the rare diseases do not have treatment. We have children who got access to the treatment under the free therapy program of the companies and are doing well. Unfortunately this treatment is not covered by the government under the National Policy for Rare Diseases and instead suggested crowd funding, said Prasanna Shirol- co founder and executive director of Organization for Rare Disease India
Going for crowd funding is difficult and keeps us waiting. We see that it should be the responsibility of the government to provide treatment to all rare diseases and save these bright children from progressive deterioration pointed out Shirol.
ORDI is a national umbrella organization representing the collective voice of all patients with rare diseases in India, setup as a section 25 non-profit company in India with a vision ‘A Better Life for people with rare diseases’. Our mission is to be the strong united voice for all rare diseases in India, to reduce inequalities and ensure that people living with these conditions to have access to the same resources as any other population, added Shirol.
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