The Central Government on Monday notified the National Health Policy for Rare Diseases, allocating Rs four crore to the All India Institute of Medical Sciences (AIIMS) whilst approving an estimated Rs 25 crore for the year 2021-22 exclusively dedicated to rare diseases. Rare diseases, despite the rarity the term implies, are a life-changing and, unfortunately, […]
rare disease
Delhi High Court asks Indian government to provide greater focus on rare disease
The Indian government has been asked to increase efforts to tackle rare diseases by March 31st by the Delhi High Court. Millions of people may be living with more than 7,000 illnesses categorised as rare diseases across India. With this in mind, the government has been asked to finalise and operationalise progressive policy implementation that involves […]
Rare disease day 2021: where does India stand?
Rare diseases, despite the rarity the term implies, are a life-changing and, unfortunately, life-ending issue for millions of people across the globe. Despite this they are among the most neglected diseases affecting humanity. A key component of the neglect for these conditions is due to the misconception regarding the sheer number of those affected. While […]
Genetic disease in India: more prevalent than previously thought?
There is a common misconception that many genetic diseases are more common in Western countries than in India. For some, this has translated to an almost total disregard for some of the most common — and deadly — diseases in India. A study conducted by MedGenome Labs, in partnership with Sir Ganga Ram Hospital in […]
Comorbid genetic diseases: a first of its kind?
Genetic, inherited conditions are typically thought of as being rare. Comorbidity with two genetic conditions, however, is all but unheard of. According to the team of doctors in Jaipur, one such case has been established. The team has noted that this is possibly a first-of-its-kind case in which one person has been diagnosed with two […]
Progeria: The importance of raising awareness and hope
Earlier this year, I wrote about the efforts of the Progeria Research Foundation to offer new hope to children affected by the rare disease progeria, by boosting access to the drug lonafarnib. To better understand the lives of those affected progeria and the work of the Progeria Research Foundation, I interviewed Audrey Gordon, President and […]
Rare disease in India: An interview with Prasanna Shirol
On the heels of the Race for 7 event in Bengaluru, co-founder and director of the Organisation for Rare Diseases India (ORDI), Prasanna Shirol spoke to Health Issues India to offer his insight into the myriad of issues facing those suffering from rare diseases within the country in an exclusive interview. Thank you for agreeing […]
Genome sequencing to assist rare diseases
India has recently completed a six-month pilot project sequencing the genomes of individuals within the nation. Could genome sequencing present a boon to combating rare diseases? Despite the infrequency the term implies, an estimated one in twenty Indians suffer from illnesses that fall under the classification of rare diseases. This translates to seventy million of […]
Rare disease: Children race for awareness
An event taking place in Bengaluru has aimed to raise awareness for rare disease, a problem affecting a vast number of Indians, yet is almost entirely swept under the rug – both in the public discourse and the formulation of government policy. Rare diseases — despite the uncommonness that the name infers — cumulatively affect […]
Rare disease policy deemed ‘Just an eye wash’
Advocacy groups for those suffering from rare diseases within India have voiced their disappointment regarding the National Policy for Rare Diseases 2020 Bill, arguing that – in many cases – the Bill offers no support to those affected by rare diseases at all. An estimated one in twenty Indians suffer from illnesses that full under […]