€5,000 in a sponsorship agreement has been awarded to the Maltese NGO, the National Alliance for Rare Diseases Support (NARDS), said Minister for Inclusion and Quality of Life Julia Farrugia Portelli.

The National Alliance for Rare Diseases Support- Malta, has said that as at 2020, The Malta National Register for Rare Diseases lists approx 4 thousand patients suffering from a rare disease. However it is estimated that there are approx 27,000 people suffering from a rare disease/condition.

Some 30 million people in Europe alone are living with a rare disease – there are 6,000 diagnosed rare diseases.

“Through this financial assistance, this Association will be able to actively participate in the United Nations Economic and Social Council,” the Minister said.

She added that, “this financial assistance will be able to cover part of the costs related to the participation in meetings, conferences and preparations necessary for any position papers with which this association represents Malta and the community that suffers from a rare disease.”

Earlier this month Rare Diseases Malta crossed over to Gozo to meet its Gozitan members and to raise awareness about rare diseases on the sister island.

The Xewkija Windmill was lit up in the world Rare Diseases Awareness colours and logo signifying the multitude of rare diseases in the world

•A disease is considered rare in Europe when it affects 1 in 2,000.

Photo: DOI/Clodagh O’Neill

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