On the 16th of October EHA and LIRH met Huntington’s disease families in Malta. The formal gathering of Huntington’s disease affected was the most participated in the country. 18 people from 6 families attended the meeting.
Together with them was EHA’s vice-president Barbara D’Alessio, LIRHs Founding Director Ferdinando Squitieri, the former Minister of Health, representatives from Caritas Malta, psycologists and social workers.
A new HD clinic?
Before the family meeting, D’Alessio and Squitieri met Caritas Malta. They discussed the future for Huntington’s disease affected and their needs. Present at the meeting was Leonid McKay, the CEO of Caritas Malta and Eleonor Borg the Head of Counseling and the Social Work Unit and Margaret.
Read more: A promising future for Malta
They discussed the possibility of establishing a free-of-charge HD clinic in the small country. Caritas Malta agreed to provide venues in the future. The rooms will hopefully function as an HD clinic. In addition future educational courses for Maltese health givers might be held here.
The family meeting
At the family meeting Barbara D’Alessio held a presentation about the many advocacy and research organizations that are actively conducted outside of Malta. The families had little knowledge about these aspects and were grateful for such relevant information.
Several young at-risk people were present at the meeting. Ferdinando Squitieri answered many questions and gave a lot of important information. He underlined that people at-risk don’t have to get tested – and shouldn’t get tested – if they don’t want to. A genetic test is solely the choice of the individual.
Mistreatment
A clear aspect emerged during the discussion: so far, patients are not properly treated.
Dr Farrugia, the former Minister of Health came and said few, but strong words. He said that, according to his knowledge and experience, HD in Malta is not a rare disease. Dr Farrugia further stated that HD patients don’t receive the due attention and that he will do all he can to support the Eurohuntington project in Malta.
Written by Barbara D’Alessio and Maiken Arnesen