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[Rare Disease Day] Health advocacy groups press for government policy, say India s numbers unknown
The 450 kinds of rare diseases recognised in India were identified because patients reported them. The government has not issued an official list of identified rare diseases.
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Only 450 of the 8,000 known rare diseases in the world are recognised in India, an anomaly that underscores a mounting health crisis in which many patients go without being diagnosed accurately or treated on time, say experts while stressing the urgent need for a comprehensive policy.
Rare diseases, including genetic disorders such as Hunter syndrome, Gaucher disease and Fabry s disease, are expensive to treat, difficult to identify, and extract a huge toll, mostly on the young, the experts said ahead of Rare Disease Day on Sunday.
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Ludwig Institute for Cancer Research mourns death of former Board Member and Trustee Sir Derek Roberts
FEBRUARY 26, 2021, NEW YORK – It is with great sadness that we report the death of former Ludwig Board Member and Trustee, Sir Derek Roberts, who passed away on February 17th at the age of 88 due to complications from COVID-19. Sir Derek served on Ludwig’s Board for nearly 14 years before stepping down in 2012.
An engineer who twice served as provost of University College London, Sir Derek oversaw several successful projects and the university’s expansion during his tenure, including its merger with the Institute of Child Health. He was an early pioneer of silicon-based integrated circuit technology, now ubiquitous in electronic devices from PCs to satellites. His professional life was spent primarily in industrial scientific research, first at Plessy-one of Britain’s largest electronics manufacturers-developing complex integrated circuits, and subsequen
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Ahead of Rare Disease Day (28 February), four leading children s research institutions on three continents are joining forces to decipher paediatric illnesses, including rare diseases, and find better treatments.
The four paediatric hospitals Boston Children s Hospital; UCL Great Ormond Street Institute for Child Health and Great Ormond Street Hospital (London); the Murdoch Children s Research Institute with The Royal Children s Hospital (Melbourne); and The Hospital for Sick Children (SickKids) in Toronto are working together to evaluate genomic data, clinical data from patients, and scientific and medical expertise to accelerate discovery and therapeutic development.
The partnership, known as the International Precision Child Health Partnership (IPCHiP), is the first major global collaboration around genomics and child health. The founding partners anticipate that additional institutions will join the collaboration in the future.
Karnataka Govt, PPHF chalk out solutions, address key challenges for rare diseases
Karnataka Govt, PPHF chalk out solutions, address key challenges for rare diseases
24 February 2021 | News The high-level recommendations which were the outcome of the discussions will be shared with the Indian Government
To chalk out solutions and to address the key challenges of rare diseases in India, Government of Karnataka along with People to People Health Foundation (PPHF), a public health organisation working towards better healthcare, organised the third edition of Rare Disease Consultation under the initiative titled ‘Blueprint of Rare Diseases in India’.
The virtual conference was aimed at prioritising access, investment, awareness, policy framework and partnerships on rare diseases in the southern states of India. The event was co-powered by Takeda Pharmaceutical and supported by Japan Embassy.