PRESS RELEASE BY THE MINISTRY FOR SOCIAL DIALOGUE, CONSUMER AFFAIRS AND CIVIL LIBERTIES: Raising the issue of rare diseases during the Maltese Presidency

Minister for Social Dialogue, Consumer Affairs and Civil Liberties Helena Dalli addressed a workshop on Integrated Research and Healthcare for Rare Diseases organised by the European Organisation for Rare Diseases (EURORDIS) and supported by the National Alliance for Rare Diseases chaired by Mrs Michelle Muscat, Spouse of Prime Minister and Honorary Patron of EURORDIS.

Minister Dalli said that the workshop is meant to raise the rare diseases issue during the Maltese Presidency of the EU Council and aims to explore synergies within and across the research and healthcare rare diseases communities, as well as gaps and existing challenges.

“I am positive that this occasion will provide no small step in creating awareness and action to be followed in favour of rare diseases and will help to dissuade any inequity towards people with rare diseases” stated Dr Dalli.

Minister Dalli explained how this ensures that any forms of discrimination are eliminated from the thoughts and actions of all people of good will.

Dr Dalli noted how in the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Nationally, there are some 25,000 patients and around 8,000 types of rare diseases.

The National Alliance for Rare Diseases Support Malta advocates for all rare diseases patients.

The workshop forms parts of the meetings of the Medicines Authority during the Maltese Presidency and is being held in parallel with the Informal Health Minister’s meeting and the meeting of the Committee for Orphan Medicinal Products at the Grand Master’s Palace.

Source: Government of Malta