The National Alliance for Rare Diseases Support Malta has just launched the 2022 nationwide Rare Diseases Campaign. With the launch held at the Parliament Foyer under the auspices of the Speaker of House Dr Angelo Farrugia, President of the National Alliance Michelle Muscat explained what the campaign will entail.
She called on for local policy makers to support the Alliance’s call for a National Action plan on rare diseases based on the European Action Plan that is currently being advocated for by EURORDIS, of which the Alliance is an active member. There are three main goals this campaign seeks to work on – ensuring that people stop losing their lives too young from rare diseases; to improve the quality of life of people living with a rare disease and; to ensure that both Europe and Malta as its member leads in rare disease innovation.
In Malta, it is estimated that there are 27,000 individuals living with a rare disease. The Malta National Register for Rare Diseases lists approx 4k patients suffering from a rare disease. However, it is estimated that there are approx 27,000 people suffering from a rare disease/condition.As per EU statistics, 30 million EU citizens currently live with a rare disease. 6,000 are diagnosed with rare diseases and 1 in 2,000 get a rare disease.
The Alliance will be advocating for more awareness about rare diseases through a month long campaign starting with a week long initiative ‘Rare in the City’ held under the auspices of The Speaker of The House.As there is no current overreaching strategy for rare diseases both at a local and European level, care and research experts across Europe must collaborate for the best possible treatments.
Michelle Muscat said that National and European policy makers should recognise the complexity of these issues and the importance of a ‘one health’ approach with measurable goals and strategic plans that are aligned with the UN Sustainable Development Goals.She also said that it was an honour for the National Alliance for Rare Diseases Support Malta to be part of the ECOSOC Committee on Rare Diseases which pushed forward the UN Resolution which was adopted inD member 2021 by the United General Assembly.
The National Alliance for Rare Diseases Support Malta will continue to ensure that its members will have a voice in our society and across the world and to make sure that the United Nations sustainability goals are fulfilled. Michelle Muscat went on to thank all the different stakeholders that form the Alliance including researchers, geneticists, genetic councillors, health professionals and the patients and their family/carers.
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