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.

This was announced by Michelle Muscat, President of the National Alliance for the Support of Rare Diseases, at the launch of the Annual Campaign for Rare Disease Awareness for this year, in the Parliament building.

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.

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, 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 Muscat.

The Speaker of the House Anglu Farrugia also addressed the event, saying that the fact that despite Malta’s size as a country, those who are sick receive care for free.  This, he said, shows how the Maltese people is a truly merciful one which takes care of the sick.