As the incidence rate of rare disease is small, it has often not caught the necessary attention in health policies. India does, however, have a dedicated National policy for Rare Diseases, allocated funding to strengthen CoEs, financial support to those patients that require one time support and a digital portal to enable sustainable flow of funds for those who require life-long high-cost treatment support.
Towards this, US India Strategic Partnership Forum (USISPF) is organizing a roundtable discussion on March 25, 2022 from 12:00 PM to 1:30 PM on Rare Disease Policy: “Provisions to Enable Institutional Donations.” This roundtable aims to to build awareness of funding rare disease patients and to discuss the enablers/barriers faced by institutional donors/ corporates in allocating CSR funds to rare disease.
These deliberations will be with Corporate Leaders and PSUs involved in CSR initiatives, patient representatives and Government of India. This is the second roundtable as part of the USISPF Roundtable Series on Rare Disease Policy. The first roundtable focused on the larger theme of “National Rare Disease Policy 2021” and “CoEs: Vital Pillar of Rare Diseases Policy and Enhancing Standard of Care” where stakeholders discussed views on the evolving infrastructure within notified CoEs and opportunities to build a better and more advanced ecosystem through collaborations.
For participation in roundtable on March 25 and to receive further communications on deliberations on topic, please do write to Nikhil George @ ngeorge@usinfoundation.org
