Young researchers must shoulder responsibility of developing low-cost treatment for rare diseases: Niti Aayog member
2 months ago

Young researchers must shoulder responsibility of developing low-cost treatment for rare diseases: Niti Aayog member

The Hindu  

Lauding significant milestones in India’s genetic research journey, V.K. Paul, NITI Aayog member, on Monday called upon young researchers to shoulder the responsibility of furthering the country’s contributions in developing low-cost treatments for rare as well as other genetic diseases. Dr. Paul emphasised landmark contributions by Indian geneticists in discovering novel gene therapies for Sickle Cell Disease and small molecules for the treatment of some other rare genetic diseases. Highlighting national collaborations that addressed rare genetic conditions, Dr. Paul announced the availability of life-saving drugs for thalassemia, Gaucher disease, Wilson’s disease, and sickle cell disease in children. Speaking on the genetic basis of brain disorders, particularly Autism Spectrum Disorder, Dr. Murthy said collaborative research under initiatives such as Accelerator Program for Discovery in Brain Disorders using stem cells, a programme funded by the Department of Biotechnology is crucial for advancing rare disease treatments.

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History of this topic

Over 70 million Indians living with rare diseases but challenges remain
3 weeks, 5 days ago

Over 70 million Indians living with rare diseases but challenges remain

India Today  

Rare diseases, also known as orphan diseases, affect a small percentage of the population but have profound health and economic impacts. In India, where an estimated 70 million people suffer from rare diseases, medical policies are critical in ensuring timely diagnosis, treatment access, and research development. High Treatment Costs: Many rare diseases require lifelong treatment, specialised care, and expensive medications. …

NIMS Data Shows Fivefold Rise in Rare Genetic Disease Cases Over a Decade
1 month, 1 week ago

NIMS Data Shows Fivefold Rise in Rare Genetic Disease Cases Over a Decade

Deccan Chronicle  

Hyderabad: The Nizam’s Institute of Medical Sciences said its department of medical genetics had seen patient arrivals for treatment for rare genetic diseases increase fivefold in a decade, from 2,400 in 2014 to 12,000 in 2024. In data shared the by institute, it elaborated on the various kinds of medical treatment procedures taken up by the department in the past …

Despite decades of advocacy, and govt backing, care for rare diseases not optimal
1 year ago

Despite decades of advocacy, and govt backing, care for rare diseases not optimal

The Hindu  

In the field of rare diseases, in India, what did not happen for 20 years, was dramatically hustled through over the last couple of years. It was nearly a dream come true for patients living with rare diseases and their families – the policy also factors in ways to lower the exorbitant cost of treatment, and boost indigenous research. The …

K.C. Deepika on rare diseases in India
5 years, 8 months ago

K.C. Deepika on rare diseases in India

The Hindu  

Nidhi was seven years old when she was diagnosed with a disease few have heard of — Pompe. Nidhi’s father, Prasanna Kumar B. Shirol, is co-founder of the Organisation for Rare Diseases India, an umbrella organisation that says it represents the collective voice of all patients with rare diseases in India. “The average diagnosis period worldwide is seven years, even …

Infosys Prize-winning chemist Dr Yamuna Krishnan on her work with DNA, and science in India
7 years, 2 months ago

Infosys Prize-winning chemist Dr Yamuna Krishnan on her work with DNA, and science in India

Firstpost  

‘We have talented women scientists, but the numbers are not in their favour,’ says Dr Yamuna Krishnan, who won the Infosys Prize in the Physical Sciences category recently These days, DNA is increasingly being explored as a ‘device’ that has the potential to go beyond its traditional biological role. Dr Krishnan’s passion for crafting nature-inspired solutions to advance science and …

Need to understand rare diseases: Kalam
10 years ago

Need to understand rare diseases: Kalam

The Hindu  

Former President of India A.P.J. Abdul Kalam on Friday said that a coordinated effort at the national level is the need of the hour for more research and understanding rare diseases in the country. The former president also felt that there was a need to share knowledge among patients, doctors and researchers to effectively tackle rare diseases. “There is a …

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