Last Updated on Tuesday, 13 August, 2019 at 11:03 am by Christian Keszthelyi
Countries should have a “holistic” approach for supporting patients with rare diseases and their families, and organisations tied to the UN should speak up in encouraging such initiatives on an international level, said Michelle Muscat, Chairperson of the Marigold Foundation and the Alliance for Rare Diseases Malta, addressing the closing of the second Rare Diseases Day Policy event at the United Nations Headquarters in New York.
Ms Muscat stressed the need for policymakers to acknowledge that patients with rare conditions should be given the same importance as those with conditions that are more widely known, according to a press statement issued by the government’s Department of Information (DOI).
“These small minorities need to be given a voice and hope that their future is brighter and less lonely,” said Ms Muscat. She added that governments around the globe on this day and age should listen to advocates of rare diseases. It is time for these advocates to talk in unison so that policymakers realise that the rare diseases community is a voice to be reckoned with, the DOI press statement says.
