Michelle Muscat
The National Alliance for Rare Diseases Support, Malta
Title: Fighting rare diseases on a small island state
Biography
Biography: Michelle Muscat
Abstract
The National Alliance for Rare Diseases Support - Malta is a voluntary non-profit organization which brings together all stakeholders including patients and their relatives, researchers, medical professionals and other organizations representing specific conditions. Set up in 2016, the Alliance represents a higher number of patients speaking with one voice, thus providing a stronger voice than a single disease support group. Rare Diseases Malta seeks to advocate and provide a national and international network for all rare disease patients and their families, to help them improve their quality of life. It also strives to strengthen already existing community services and rare diseases groups, by taking a central role in helping these entities take their cause to a higher level.
NATIONAL
On a National level RDM strives to promote public awareness on rare diseases by organizing Rare Disease Campaigns, an annual Rare Disease Day Gala Dinner, TV advertorials, participating in educational national events such as Science in the City and the Rare Disease Colloquium organized by the University of Malta. This year a Rare Disease Seminar targeted at the Community Healthcare Services, was organized in collaboration with the University of Malta.
The National Alliance for Rare Diseases Support – Malta aims to empower its members and make sure they are listened to by organizing regular members’ meetings and get together, where speakers coming from the field of rare diseases like; Health professionals, Researchers, EURORDIS representations and Rare Disease patients themselves, are invited to give talks and share their experiences with RDM members. The Alliance is committed to create an online platform of information and direct links to other international institutions.
INTERNATIONAL
On an International level, RDM has been approved as member of EURORDIS, the European Organization for Rare Diseases representing 738 rare disease patient organizations. Mrs Muscat has been appointed Honorary Patron of Eurordis since 2015. RDM is also member of Rare Diseases International.
During Malta’s tenure as President of the European Council, RDM worked hard to raise the issue of Rare Diseases on a European platform. Malta hosted and got together all the main players including all the European Health Ministers.
The National Alliance for Rare Diseases Support – Malta participated with five other international communities to support Rare Diseases International, to launch the first ever Non-Governmental Organization (NGO) Committee for Rare Diseases at the United Nations, as part of the Conference of NGOs (CoNGO). This Global Gathering insisted for the first time that Rare Diseases receive proper consideration as a global public health priority for action within the United Nations, as part of the 2030 Sustainable Development Agenda and Goals.