Search For "rare disease"
Indo-US Bridging RARE Summit 2024: Effort against rare diseases, celebrate
Updated : 1 year, 3 months ago IST
The Indo-US Bridging RARE Summit 2024 took place in New Delhi, India from November 16 to November 18. The Summit saw key speakers from India and the US discuss various aspects of rare diseases, orphan drug clinical trials and diversity, equity and inclusion for orphan drugs.
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14-month-old Kenyan infant treated for rare life-threatening disorder in G
Updated : 1 year, 4 months ago IST
There are only 150 documented cases of this exceptionally rare and life-threatening disorder globally, with a survival rate beyond one year. The prevalence of this disease is approximately 1 in a million.
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Rare diseases matter: Delhi HC directs centre to set up NRDF, says right t
Updated : 1 year, 5 months ago IST
While disposing of a batch of more than 100 petitions moved on behalf of patients suffering from Rare diseases, the Delhi High Court said that the Right to health is an integral part of the right to life.
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Rare Disease India Foundation Leads the Initiative to Form Hunter's Allian
Updated : 1 year, 6 months ago IST
New Delhi [India], September 2: The Rare Diseases India Foundation (RDIF) held a national meeting, bringing together medical experts, government officials and patient advocates to address the pressing needs of those affected by Hunter's Disease (MPS Type II). The event aimed to form a Hunter
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Study finds how rare diseases highlight connections between metabolism, im
Updated : 1 year, 6 months ago IST
A new study suggested that inherited immune and metabolism disorders are more similar than previously believed. The results provide fresh information that may help patients with these illnesses receive better care by highlighting a novel collection of metabolic genes that are critical for im
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Kerala has developed SOP for treating amoebic meningoencephalitis, a rare
Updated : 1 year, 7 months ago IST
Kerala Health Minister Veena George said that the Kerala government has developed an SOP for the treatment of amoebic meningoencephalitis as the country does not have an SOP for it as it is a very rare disease globally.
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Study finds how genetic diagnostics of ultra-rare diseases
Updated : 1 year, 7 months ago IST
Most rare diseases are caused by genetics. A molecular genetic diagnosis can be made more quickly and readily by identifying the underlying genetic change, for instance by exome sequencing (ES). The analysis of every region of our DNA that codes for a protein is known as ES.
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Odisha CM Majhi directs to provide health assistance to Bhadrak boy suffer
Updated : 1 year, 9 months ago IST
Babuli is a 14-year-old boy from Madhapur village of Chandbali in Bhadrak district. His parents, Chintamani and Jharana Barik, are poor. He is suffering from a rare kind of disease called traumatic neuromotor disorder.
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DoH, Takeda Pharmaceuticals ink strategic partnership to advance rare dise
Updated : 1 year, 9 months ago IST
The strategic cooperation aims to establish a framework of collaboration to enhance research endeavours in rare diseases and oncology.
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Delhi: 13-year-old girl in coma wakes up after liver transplant
Updated : 1 year, 10 months ago IST
A few years ago, Radha suffered from liver failure. She was diagnosed with the rare disease Wilson's, and ever since then, she has battled with the aberrant accumulation of copper in her organs, particularly her liver, hepatitis A dealt a deadly blow to her already damaged liver, leading to
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Rajasthan: 22-month-old baby battles rare disease, Rs 17.5 Cr injection ne
Updated : 2 years ago IST
22-month-old Hridyansh is fighting the most severe form of Spinal Muscular Atrophy (SMA) Type 2, which causes the wasting of voluntary muscles and impairs breathing.
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Alkem Laboratories Raises Awareness of Rare Lung Diseases on World Rare Di
Updated : 2 years ago IST
New Delhi/ Mumbai (Maharashtra) [India], March 1: As the world prepares to observe World Rare Disease Day on February 29, 2024, the focus is on the critical need to tackle rare lung diseases affecting individuals globally. This day serves as a poignant reminder of the challenges faced by tho
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