Government asked to fund rare diseases management program

MANILA, Philippines — The government has been asked to allocate additional funding for the implementation of Republic Act 10747 or the Rare Disease Act.

The Universal Health Watch Philippines made the appeal as the Integrated Rare Diseases Management Program has yet to be fully implemented seven years after the passage of the law in 2016.

“Persons suffering from rare diseases need the help of society, and these efforts must be led by the government,” Alvin Manalansan, co-convenor of Universal Health Watch, said in a statement.

“It took the government years to make the first appropriation of P104.9 million for the Rare Diseases Law in 2022,” Manalansan added.

He said the government reduced the funding to P28.809 million for next year.

Manalansan said issues confronting patients afflicted with rare diseases would be discussed during a dialogue among stakeholders at Seda Residences in Makati on March 21.

The event, dubbed “Sustaining Gains and Balancing Priorities: Implementation of Rare Disease Act,” was organized by Universal Health Watch in partnership with the Philippine Society of Orphan Disorders and Stratbase ADR Institute.

“Rare disease patients need access to diagnosis, treatment and care,” Manalansan said.