The Union Ministry of Health and Family Welfare on Tuesday inaugurated the 2-day National Conference on Rare Diseases in New Delhi, being held on 5th and 6th May, marking a significant step towards strengthening India’s response to the challenges posed by rare diseases.
To bridge the gap between lack of knowledge and awareness, many non-governments are working to raise awareness, support patients, and push for policy changes to improve the lives of those affected by rare diseases.
Known as Ikris Pharma Network (IPN), the company is said to have been assisting at least 58 Indian patients, who have been suffering from DMD, a genetic disorder characterised by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.
