Launch of the Rare Diseases Campaign – 1 February 2024

Launch of the Rare Diseases Campaign 2024

The National Alliance for Rare Diseases Support – Malta has launched the 2024 Nationwide Rare Diseases Campaign.

The launch was held at the Parliament Foyer under the auspices of the Speaker of the House, Dr Angelo Farrugia.

Speaking during the launch, the President of The National Alliance for Rare Diseases Support – Malta, Michelle Muscat said that the Alliance will inviting all Maltese candidates for the European Parliament Elections to join it and the European Association for Rare Diseases EURORDIS, in the work that is needed to draw up a European plan that integrates together care and support for patients with rare diseases.

Mrs. Michelle Muscat, President of the National Alliance for Rare Diseases, said this at the launch of the Annual Campaign for Rare Disease Awareness for this year. This message was echoed by Mr. Yann Le Camm, EURORDIS CEO, in a letter sent to the Rare Diseases Malta on the occasion of the launch of the 2024 Rare Diseases Campaign.

Mrs. Muscat said that in this case there is no partisan politics and the Alliance hopes that the candidates of all political parties will accept its invitation. This will help patients to have access to the best treatment, care and research.

The Alliance strongly believes that with more widespread awareness and a coordinated effort, concrete results can be achieved for patients and their families. Mrs. Muscat spoke about the collaboration that exists with the Chinese authorities and the work that is being done to start contacts with large hospitals in China in order to establish relationships that can be of benefit to other Maltese patients.

Mrs. Muscat said that the Alliance will continue to help as many patients with rare conditions as possible to have access to research which is often the only hope for them. During this year Chinese medicinal therapy will continue to be given to patients who are members of the Alliance at the Mediterranean Center for Traditional Chinese Medicine in Kordin.

Mrs. Muscat added that the Alliance will be focusing also on schools to convey information about these conditions and show the value of careers in medicine, science and research. This will be done through an educational pack created in collaboration with the Orphan Health Care Foundation for Rare Diseases in Switzerland.

The President of the National Alliance for Rare Diseases also thanked the Minister of Health Jo Etienne Abela for his presence, for the first time after four years. She added that this is a very good sign from the Government showing that it is paying attention to this minority of patients. Mrs. Muscat stressed that the Alliance looks ahead to discuss with the Government a national strategy on rare diseases in the coming months.

The conference was also addressed by the Minister of Health Jo Etienne Abela, Profs Alex Felice, Dr. Chris Barbara, Hon. Ian Vassallo and Deputy Speaker David Agius.