La Fondazione LIRH onlus promuove ogni anno iniziative di informazione e divulgazione. Di seguito troverai elencate tutte le nostre iniziative.
On May 26 at 9.30 pm the Abbey of San Miniato al Monte in Florence will light up purple to draw attention to Huntington's disease in the International HD Awareness Month
The Abbey of San Miniato al Monte, one of the most visited places by people from all over the world, a splendid synthesis of art, spirituality and history, together with the Municipality of Florence, participates in the International HD Awareness Month through a symbolic initiative of great significance: on Thursday 26 May at 9.30 pm the Abbey will light up in purple magenta, the color of the LIRH Foundation - and will remain illuminated also the following evening - to testify proximity to those who face and fight Huntington's disease.
The appointment is at the Antas Theater in San Sperate (Cagliari) at 3.00 pm, Saturday 28 May 2022.
In the HD Awareness Month, LIRH Sardinia Association promotes a meeting open to Huntington families, to share spaces and times, thoughts, needs and information on the current available therapeutic options and on the disease management.
"Sardinian families have been isolated for too long." - said Alessia Zurru, President of the LIRH Sardinia Association - The time has come, also for us, to be taken in charge and to access experimental programs ".
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.
On the occasion of World Rare Disease Day 2022, we want to share ALL the colors of Huntington's disease: the patients' and ours.
On the occasion of World Rare Disease Day 2022, we asked HD patients, researchers and practitioners what color they associate with Huntington's disease and why.
we are the italian league for research on huntington disease and these are our colors!!
uniQure announced the dosing of the first two patients in its European open-label Phase Ib/II clinical trial of AMT-130, a potential one-time gene-therapy approach for the treatment of Huntington’s disease. The clinical trial is taking place at several sites in Poland, the United Kingdom and Germany.
On the last February 2, 2022 uniQure sent out a press release with new updates on their gene therapy for Huntignton Disease.
The recent fase III Generation HD 1 study data discloure from Roche was accompanied by the announcemenet of re-testing the drug in a Fase II study on a subgroup of patients.
A few days ago Roche announced that a Phase II study with tominersen will start soon. Tominersen is the ASO (Oligonucleotide Anti Sense) whose experimental administration was interrupted in March 2021, following the negative evaluation of its effects on patients, by an Independent Evaluation Commission. In this article we take stock of what we know and what we don't know yet.
Time spent on hobbies throughout life helps to better cope with loss of cognitive function and independence in people with early stage Huntington's disease.
The study, entitled Cognitive Reserve in Early Manifest Huntington Disease Patients: Leisure Time Is Associated with Lower Cognitive and Functional Impairment, was recently published in the Journal of Personalized Medicine, in the special issue on Huntington's disease, edited by prof. Ferdinando Squitieri.
It was conducted by the IRCCS Casa Sollievo della Sofferenza and by the LIRH Foundation, in collaboration with the Sant’Andrea Hospital in Rome and the IRCCS Carlo Besta in Milan.
Poco meno di un anno fa si assisteva all'insuccesso di tre studi clinici sulla malattia di Huntington. Oggi, per fortuna, possiamo parlare di nuove prospettive terapeutiche, basate su una tecnologia più evoluta delle precedenti.
Poco meno di un anno fa siamo rimasti tutti sgomenti di fronte all'insuccesso di tre studi clinici, ma oggi non solo possiamo parlare di nuove prospettive terapeutiche, ma addirittura di prospettive basate su una tecnologia più evoluta delle precedenti.
Per arrivare a questo, c’è stato un enorme impegno da parte di tutti: le industrie, i ricercatori e i pazienti. Non dobbiamo mai dimenticare che è possibile condurre sperimentazioni sulla malattia grazie all'elevato tasso di partecipazione dei pazienti.
16 December, 2021: The data support the tolerability of AMT-130, a potential one-time gene-therapy approach for Huntington’s disease
Yesterday, December 16, 2021, uniQure sent out a press release whose 4 highlights are as follows:
1 - The treatment was well tolerated with no significant safety issues related to AMT-130 in first two treated patients through one year of follow-up;
2 -Neurofilament Light Chain (NfL) rose, as expected, immediately following surgery and returned to baseline in treated patients;
Pharmaceutical companies confront researchers and patients on the HD treatments perspectives
The future of therapeutic research to cure Huntington's disease.
This is the title of the LIRH Foundation 2021 Annual Conference, which will take place online next Friday 3 December, from 15.00 to 17.30 CET.
