Huntington patients at the forefront of the right to care: the LIRH Sardinia Association was born
Last Saturday, March 19, 2022, on the initiative of a group of patients and family members willing to advocate for their right to treatment, the Italian Huntington Research League (LIRH) Sardinia was officially born.
We are happy to announce that last Saturday, March 19, 2022, on the initiative of a group of patients and family members willing to advocate for their right to treatment, the Italian League Huntington Research Association (LIRH) Sardinia was officially born.
Despite the presence of several HD families in the beautiful island, there are no Centres available for those suffering from, or at-risk of inheriting HD in Sardinia.
So, the patients have decided to create an Association. Because they share the mission and the care model of the Italian Huntington Research League Foundation (LIRH Foundation), they named the Association 'LIRH Sardinia',
Based on Italian projections of HD frequency, in Sardinia HD may involve about 1.000-.1500 people with the risk of inheriting it. "We want that also Sardinian HD families have the opportunity to participate in research initiatives, as well as to access proper care" comments Prof. Ferdinando Squitieri, LIRH Foundation Scientific Director and Head of the Huntington Unit at Casa Sollievo della Sofferenza Research Hospital.
"Feeling rare, when we talk about genetic diseases, often means feeling alone. I experienced Huntington's disease in my family in great solitude and with a profound sense of isolation, also due to the lack of adequate support from doctors and institutions. This cannot and must not happen anymore. Today we are already a network of family members who support each other, but it is not enough. Establishing the LIRH Sardinia Association means becoming a recognized entity, that can help all those who live with Huntington in the our Region to come out of isolation and give them a voice, that deserves to be heard. The LIRH Foundation has demonstrated with facts that it is possible to take care of Huntington's patients and guarantee them proper assistance. Becoming part of LIRH network is a great hope for us, the hope that even the Sardinian patients can finally feel "taken in charge" in our island and maybe, one day, thanks to the research and clinical trials, have access to a cure. This is the greatest dream and even if the journey is long, we are convinced that it is necessary not to stand still and wait, because our needs can no longer go unheeded. "These are the words of Alessia Zurru, new elected President of the Association. LIRH Sardinia.
"We are happy to welcome LIRH Sardinia into our 'family''. They join LIRH Tuscany, LIRH Puglia and NOI Huntington-The Italian Youth HD Association. The burden of Huntington's disease becomes more manageable if it is shared among patients, clinicians and researchers. We want all families affected by this rare disease, in Sardinia as well as in the rest of our Country, to be properly followed and 'treated' according to international standards. It is not easy because it is a rare disease, little known even by professionals. Together and alongside LIRH Sardinia, we are ready to collaborate with professionals, centers and institutions who wish to spend themselves to improve clinical practice on Huntington's disease, while respecting the rights and needs of patients and their families "- says Barbara D'Alessio, President of the Italian Huntington Research League Foundation (LIRH Foundation).
To contact LIRH Sardegna: firstname.lastname@example.org