rare disease India
Article in popular Indian newspaper calls for a collaborative stakeholder effort to address rare disease issues
An Opinion piece published in the Hindu, a widely-read English-language Indian newspaper makes a plea on behalf of the country’s rare disease patients, of whom there could be more than 70 million, based on current global estimates. The article demonstrates a burgeoning awareness for rare diseases in the populous country. Acknowledging that more demanding health issues render the government’s attention to rare diseases virtually non-existent, the author calls on scientists, health professionals, the pharmaceutical industry and non-governmental organisations, including disease support groups, to pool resources in order to raise awareness of the struggles rare disease patients and their families face in India. While Rare Disease Day, celebrated the last day in February, has succeeded in bringing attention to the rare disease cause in urban areas, it has made no impact in rural areas. According to the author of the Hindu article, who is the founder of the non-profit Foundation for Research on Rare Diseases and Disorders and its knowledge-based resource Rare Diseases India, researchers have begun concentrating on one village, on an experimental basis, to collect information on suspected rare disease patients, most of whom do not have a diagnosis for their conditions, with the aim of gathering patient information and assisting patients to obtain diagnosis and treatment.
source: eurordis