When the Huntington’s Disease (HD) Therapeutics Conference took place in Malta late April, the European Huntington Association used the opportunity to meet two HD family members. They told us about the situation HD families in Malta faces today.
It is a small island and it is densely populated. From a population of 420.000 people there are between 50 and 60 families affected by HD.
Many of the affected finds it hard to be open about the disease as it seems to be a lot of stigma connected to HD. Few wants to attend meetings and the health services provided are often not good enough. Few or none of the doctors are specialised in HD. People are struggling to manage their daily life.
Improving the situation
EHA represents a strong network and we want the Maltese HD-community to have an opportunity to meet experts and clinicians with HD knowledge. Professor Ferdinando Squitieri and Barbara D’Alessio, the Vice-President of EHA, has therefore offered to assist to organize a outpatient clinic specialized in HD via our good friends LIRH. So what is LIRH?
Lega Italiana Ricerca Huntington (LIRH) or the Italian League for Research on Huntington and related diseases Foundation is a not for profit organization supporting and conducting scientific research, providing patients with free of charge assistance, promoting awareness raising initiatives, training professionals and spreading research results.
The Foundation is characterized by a strong international vocation, as a member of the International Huntington Association and of the European Huntington Association.
Furthermore, LIRH work in very close cooperation with the main contributors involved in HD research all over the world.
Astri Arnesen says: “To meet the family members was such an inspiration for all of us. We hope Dr Squitieri will succeed to motivate a few doctors in Malta to specialize in HD and provide better services to the families. EHA will support this initiative in any way we can”
The initiative is also supported by the catholic church. Father Michael from Malta promised to help finding Maltese doctors that may be interested to take part in the collaboration and establish an outpatients free of charge service for HD families
Professor Ferdinando Squitieri is MD, Ph.D and Head of Unit/Casa Sollievo Sofferenza and Neurology at CSS-Mendel – Founding Director of LIRH Foundation. By the help of Father Michael he has already got in touch with one doctor who wants to cooperate on the initiative and they will meet soon to plan how a small clinic can be organized.
“I highly welcome this offer and we will work very hard to see if we can be present in Malta so our Huntingtonian friends can get the latest news, be a part of a strong network in Europe and take benefit from the latest research,” Arnesen says.