Rare diseases continue to reap a considerable toll in India as patients struggle to avail treatment despite notified policies from the Central Government. “Rare diseases are a serious public health concern in India, with an estimated burden of about 80 to 96 million cases reported annually,” said Dr Prashanth Bagali, Practice Head-Oncology at Strand Life […]
Rare diseases continue to blight India Read More »
A recent article published in The New York Times has shed light on a rare disease case in India, one in which the family is now struggling to raise a shocking total of 2.1 million USD via social media before their daughter turns two years old. The Praveen family’s fourteen month-old daughter, Ellen, was rushed
Online plea for help with rare disease Read More »
The Delhi High Court has recently voiced their disapproval of the continued neglect for the treatment of rare diseases. The Court took issue with the fact that funding for treatment was still not being provided for Duchenne muscular dystrophy (DMD) despite requests by the Court. The High Court passed an order on 14th December
Delhi High Court weighs in on rare disease treatment Read More »
An Indian company, part of a broader group of firms under the Takeda, banner has announced a new diagnostics programme aimed towards rare diseases. The “ILLUMINATE” programme, independently run and managed by PerkinElmer and sponsored by Baxalta Bioscience India, aims to improve diagnosis rates of patients with Lysosomal Storage Disorders (LSD). Raredisease.org defines LSDs
Rare disease diagnosis programme unveiled by Takeda Read More »
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,
Notified policy on rare diseases unveiled Read More »
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
Delhi High Court asks Indian government to provide greater focus on rare disease Read More »
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
Rare disease day 2021: where does India stand? Read More »
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
Genetic disease in India: more prevalent than previously thought? Read More »
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
Comorbid genetic diseases: a first of its kind? Read More »
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
Progeria: The importance of raising awareness and hope Read More »
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