Vardhan chairs meet to discuss crowd-funding for treatment of rare diseases

New Delhi: Union Health Minister Harsh Vardhan on Thursday chaired a high-level virtual meeting with associations representing business corporate entities and select PSUs to discuss voluntary crowd-funding for treatment and care of patients suffering from rare diseases and TB-free corporate spaces.

The minister said the purpose of the meeting was to discuss the way forward for wider partnership with and participation of the private corporate sector for noble causes that have hitherto remained unexplored, a Health Ministry statement said.

Extending his gratitude to the corporate sector and various Public Sector Undertakings for their support to help the country tide over the second wave of the COVID-19 pandemic, Vardhan underscored the need for engagement of the private sector in filling the gap that presently exists in extending quality healthcare largely generated by resource constraint and competing health priorities, to those suffering from rare diseases in the country, it said.

He appealed to the corporate associations and PSUs to contribute generously to the cause of treatment of patients with rare diseases under CSR initiatives.

Globally, eight percent of the population suffers from rare diseases. Seventy five percent of the survivors are children which makes parents run from pillar to post for their treatment, exhausting their resources and emotionally draining themselves in the process," the minister was quoted as saying in the statement.

Vardhan also enumerated the different steps taken by the government in facilitating the creation of an environment which promotes research and development of diagnostic and therapeutic interventions for rare diseases within the country.