The National Alliance for Rare Diseases Support Malta City: Phone : +35699912373
The Marigold Foundation started a two year long campaign on the need to set up a national alliance on rare diseases. Through its fund-raising activities The Marigold Foundation raised enough funds to set up the National Alliance for Rare Diseases Support – Malta.
The National Alliance for Rare Diseases brings together all the stakeholders including patients and their relatives, researchers, medical professionals and other organisations representing specific conditions. Through the setting up of the Alliance, representation of patients has been magnified with more care, support and awareness for the benefit of the rare diseases patients and their relatives.
Through the work of The Marigold Foundation and The National Alliance for Rare Diseases Support - Malta, Rare Disease Day and Rare Disease Month has been marked with various events including rare disease colloquiums at the Biobank of the University of Malta, patient gatherings and meetings, fund-raising gala dinners, art and cultural expositions, seminars, press releases, TV advertorials, hospital awareness campaigns with the members participation and the promotion of RDM logo and contact information on the pharmacy bags to reach out to rare disease patients and their relatives.
The National Alliance for Rare Diseases Support - Malta works hand-in-hand with various stakeholders to raise awareness about rare diseases and managed to get the support of the civil service to raise the flag for the rights of people living with a rare disease.
The National Alliance for Rare Diseases Support Malta has worked tirelessly to raise the rare disease issue at the European Presidency during Malta’s tenure of the EU Presidency. The Alliance is also working closely with EURORDIS and RDI to help them raise the agenda of rare diseases on a United Nations platform.