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The Global Gathering for Rare Diseases – 11 November 2016

Project Description

The National Alliance for Rare Diseases Support – Malta (RDM) is proud to announce its participation with the International Communities supporting rare diseases to launch the first ever NGO Committee for Rare Diseases at the United Nations, as part of CoNGO. This historic event brought together knowledge and experts to progress towards greater recognition of rare diseases as a global priority in the fields of health policy, research and social and medical care.

The goal of the NGO Committee for Rare Diseases is to bring visibility and understanding of rare diseases to the United Nations, a platform where they have received little attention until now.

The inauguration event, the ‘Global Gathering for Rare Diseases’, held in New York on Friday, 11 November 2016 brought together CoNGO, as well as several national governments with Malta addressing the conclusion of this event through the participation of the Prime Minister of Malta Dr. Joseph Muscat, the Minister of Social Dialogue Helena Dalli, the Minister of Health Chris Fearne, and the President and Founder of the National Alliance for Rare Diseases Support – Malta, Mrs Michelle Muscat.

During a special message aired as conclusion of this Global Gathering, Prime Minister Muscat said that Malta will be furthering its support to the cause by putting this issue on the agenda of the European Union when Malta holds the Presidency of the EU during 2017. Minister Helena Dalli pledged her support to help this cause through a discussion on the way forward for the pharmaceutical industry together with the gathering of the international representatives of Rare Disease and Research. Minister Chris Fearne reiterated his Ministry’s support during the EU Presidency’s Malta gathering of the European Health Ministers. The President of RDM, Michelle Muscat, said that this is the fruit of sheer hard work where awareness of rare diseases on an island state was practically nonexistent until three years ago, with Malta now being one of the few countries having a national register and a National Alliance providing support for the persons living with a rare disease whilst being advocates on the European and International arena.

The launch event brought together over 30 leaders from the international rare disease community, including heads of rare disease patient organisations from around the world and international rare disease federations as well as experts from UN bodies and the European Union.