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Launch of the Rare Diseases Campaign 2023 – 31 January 2023

Project Description

Launch of the Rare Diseases Campaign 2023
The National Alliance for Rare Diseases Support – Malta has launched the 2023 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 announced that an 18-year-old Maltese man with a rare condition in his eyes (LHON disease) has been accepted to take part in a clinical trial with 9 other patients in a hospital in Hubei Province in China.
This could be done because of an agreement that the National Alliance for the Support of Rare Diseases signed with the Chinese authorities with the help of the Chinese Embassy in Malta.
Mrs. Muscat said that while no one should be filled with too much hope, this step is offering a glimpse of hope where there was no hope. This clinical trial includes the administration of a drug whose market price is approximately $850,000. The medicine will be given free of charge by the Chinese authorities to the Maltese patient through the agreement signed by the National Alliance for the Support of Rare Diseases.

Through this same agreement, therapy will be provided to patients who are members of the Alliance at the Mediterranean Centre for Traditional Chinese Medicine in Kordin, with a group of 24 people starting in the coming weeks.

Mrs. Muscat said that this year’s Rare Disease Awareness campaign will focus mostly on schools to convey information about these conditions and show the value of careers in medicine, science and research. To do this, the first book on rare diseases aimed at primary school students will also be launched.

The Alliance, Mrs. Muscat continued, is pleased to note that in recent months the Government has started to take action and hopes that the NGO is invited in discussions on a National strategy on rare diseases. The Alliance looks forward to sitting around a table with the Government to discuss all this.
“There is a need for a strategy at both Maltese and European level, which serves to ensure that patients have access to the best treatment, care and research. At the same time, there is still a need for more awareness among those who make decisions about the importance of a holistic attitude, which can be measured according to the Sustainable Development Goals of the United Nations”, emphasised Mrs. Muscat.

The speaker of the House Dr. Anglu Farrugia, Prof. Alex Felice as well as Dr. Robert Xuereb addressed the press conference.