Patient advocacy groups seek more funds for treatment of rare diseases
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‘Focus on research will help to cut the cost for healthcare systems’
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‘Focus on research will help to cut the cost for healthcare systems’
On Rare Diseases Day which fell on Sunday, stakeholders demanded more funds for treatment of patients afflicted with known rare diseases, besides more research.
According to the Indian Society for Clinical Research, there are 7,000 known rare diseases that have affected 300 million people across the globe. Of them, 70 million are in India, and most have no or very limited treatment options.
Society president Chirag Trivedi said one in 20 persons would live with a rare disease at some point in life. A large number of patients had no access to appropriate diagnosis or treatment. “This should be a wake-up call for clinical researchers,” he said. Focus on research could reduce the cost for healthcare systems and improve the qua
For Kota-based vegetable vendor and kirana store owner, Mohamad Rafiq, life delivered a nasty punch not once but twice. His first born, a girl by the name of Parveen Nisha, was born with a rare genetic disease called Gaucher’s disease.
In this metabolic disease, the patient is born without an enzyme which is responsible for breakdown of fat. In its absence the fat starts accumulating in the liver and spleen, making them grow in size. The child starts to look like a pregnant woman.
Parveen could be diagnosed only by the time she turned one-and-a-half and she didn’t survive beyond her 5th birthday because her poor parents couldn’t afford the treatment that costs about Rs 1 crore per year and is life-long. Rafiq’s second born, a son, suffers from the same disease. Now, 4, Rafiq’s son benefitted from free treatment provided by a pharma company for about six months. But his future is uncertain. While the Jaipur high court has ordered a local hospital to foot the bill of his
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Families with SMA babies hope for miracle cure
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Parents of babies with Spinal Muscular Atrophy (SMA), a rare genetic disease, came together at an event organised by Bangalore Baptist Hospital in the city on Tuesday.
Raman Gowda and Beembai, parents of one-year-old Aadhya, said they are waiting for some miracle cure for their baby. Another family came down from Chennai to discuss their 3.5-year-old daughter Rudra’s daily progress with the doctor.
SMA is a disease caused by loss of nerve cells, which carry electrical signals from the brain to the muscles. The disease, as it progresses, makes it extremely difficult for the babies to carry out basic activities like sitting up, lifting their head, swallowing milk and even breathing.