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
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 […]
New central guidelines for gene therapy
New guidelines devised by the Indian Council of Medical Research (ICMR) may help to standardise gene therapy product development and clinical trials. Gene therapy has the potential for transformative change for the potential seventy million individuals residing in India that are affected by rare diseases. This is one of the key aims of the guidelines, […]
Is genome sequencing the answer to rare diseases?
Rare diseases — despite the infrequency that the name confers — cumulatively affect around 350 million people worldwide. This figure includes roughly seventy million Indians. Could genome sequencing prove to be the tool that begins to spark medical innovation and diagnosis for the millions affected by such disorders? The Economic Times notes a recent case […]