Youtor
Status of Rare Diseases Today
>> YOUR LINK HERE: ___ http://youtube.com/watch?v=9V_DmRVODkg
Status of Rare Diseases Today • This event is in partnership with Global Genes and the Sappani Foundation. • India has one of the largest number of rare disease patients in the world and has recently come with a draft policy on rare diseases. This panel — consisting of experts in the rare disease space from India as well as globally renowned experts from academia, industry, patient groups, among others — will engage in a broad discussion and take stock of the state of rare diseases as well as the one year of the formulation of the Rare Disease Policy in India. • The panel will discuss the status of rare diseases in the public policy sphere — successes and next steps, in addition to discussing genetic testing, a compilation of a national registry, what India could learn from the global experience and how India could help on the global rare disease research and policy. • Speakers • Prasanna Shirol • Co-Founder and Executive Director, Organisation for Rare Disease India • Sheffali Gulati • Chief, Child Neurology Division, Department of Pediatrics, AIIMS, New Delhi • K. Vijay Raghavan • Principal Scientific Adviser to the Government of India • Craig Martin • CEO, Global Genes, US • Craig Lipset • Co-Chair, Decentralised Trials and Research Alliance (DTRA), US • Moderator • Shamika Ravi • Vice President, ORF • #RareDiseases
#############################
