Mrs Michelle Muscat addresses the closing of the Second High Level Event of the NGO Committee for Rare Diseases at the United Nations Headquarters in New York on 21 February 2019.
“Each and every country should have a holistic strategy to support patients with rare diseases and their families. Furthermore, the United Nations and related organisations should be at the forefront to encourage such initiatives at international level”.
This was stated by Michelle Muscat, Chairperson of The Marigold Foundation and The National Alliance for Rare Diseases Support – Malta in a video message addressing the closing of the Second High Level Event of the NGO Committee for Rare Diseases at the United Nations Headquarters in New York.
As Chairperson of an NGO from a small island state, Mrs 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.
“These small minorities need to be given a voice and hope that their future is brighter and less lonely,” said Michelle Muscat, surrounded by Maltese rare disease patients.
Michelle Muscat said that governments around the globe at this day and age should listen to advocates of rare diseases. “It is time for these advocates to talk in unison so that policy makers realize that the rare diseases community is a voice to be reckoned with”.
The National Alliance for Rare Diseases Support – Malta is proud to have been participated in co hosting this event and thanks the Permanent Mission of The Republic of Malta to the United Nations for its commitment to the cause. The Alliance is proud to have been on the forefront to raise this issue of rare diseases to the United Nations level and will continue to support its members and to advocate for more awareness, research, and the inclusion of rare disease patients.