Rare disease alliance wants MEP candidates to join awareness campaign

National Alliance for Rare Diseases hoping to start work on national strategy with health ministry

Michelle Muscat addresses a press conference at the parliament building in Valletta
Michelle Muscat addresses a press conference at the parliament building in Valletta

The National Alliance for Rare Diseases has called on all Maltese candidates for the European Parliament Elections to join it and the European Association for Rare Diseases (EURORDIS) in the work needed to draw up a European plan that integrates care and support for patients with rare diseases.

Michelle Muscat, president of the National Alliance for Rare Diseases, addressed the annual campaign for Rare Disease Awareness for this year, together with a message from Eurordis CEO Yann Le Camm.

Muscat said the Alliance hopes that candidates of all political parties will accept the invitation to help patients 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,” Muscat said.

Muscat spoke about the collaboration with Chinese authorities and contacts with large hospitals in China to establish relationships that can be of benefit to other Maltese patients.

“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 Centre for Traditional Chinese Medicine in Kordin,” Muscat said.

The Alliance will also focus on schools to convey information about these conditions and show the value of careers in medicine, science and research, with an educational pack created with the  Orphan Health Care Foundation for Rare Diseases in Switzerland.

Muscat thanked health minister Jo Etienne Abela for his presence at the launch of the campaign, noting this was the first time in four years. “This is a very good sign from the government, showing that it is paying attention to this minority of patients. We look ahead to discuss with the government a national strategy on rare diseases in the coming months.”

The conference was addressed by Abela, Prof. Alex Felice, Dr Chris Barbara, and MPs Ivan Vassallo and deputy Speaker David Agius.

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