La Fondazione LIRH onlus promuove ogni anno iniziative di informazione e divulgazione. Di seguito troverai elencate tutte le nostre iniziative.
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Rare Diseases affect less than 1 in 2,000 people. There are about 8,000 rare diseases. In Europe, there are 30 million rare patients of whom, according to Orphanet estimates, about 2 million live in Italy. The word 'rare' must therefore not be misleading, because the community of rare patients is big. The many rare diseases that exist are different from each other: for the different ages at which they can arise, for the type of disability they cause, for the knowledge or not of the cause, for the possibility or not of preventing them, for the availability or not of a care.
Finally Good news for the Huntington's community!
We received yesterday the official communication from uniQure, announcing that the enrollment of the first patient cohort in the study of ATM-130 for the treatment of Huntington's disease has concluded, ahead of schedule.
But the good news don't end here: a new clinical trial with AMT-130 will be initiated in Europe by the end of the year.
26/03/2021
On Wednesday, 24/03/2021 was held a meeting via zoom between investigators, associations and patients to answer the many questions arising from the unexpected news of the interruption of the dosing of the experimental drug tominersen in the phase III 'Generation HD1" clinical trial.
The investigators of the Italian centers involved in the study, promptly responded to the need for immediate answers, taking into account that the data behind this decision have not yet been made public.
23/03/2021
On March 22nd, 2021, a press release from Roche revealed that the phase III study of tominersen had been halted on the advice of the Independent Data Monitoring Committee (iDMC).
22/02/2021
LIRH Foundation participates in World Rare Disease Day 2021. The voices of patients and caregivers will take on color through their testimonies:
what does it mean to have a rare disease?
what does it mean to have Huntington's disease?
if you were the minister of health, what would you do?
The protagonists will answer these questions. Starting from today, February 22, until Sunday, February 28, World Rare Disease Day.
10/02/2021
27/1/2021
A recent study identifies a new biochemical mediator potentially able to represent a marker of neurodegeneration in Huntington's disease, Alzheimer's disease and Parkinson's disease.
20/01/2021
The first two Italian patients started the trial today, January 20, 2021, in Rome, at the CSS-Mendel Institute, section of IRCCS Casa Sollievo della Sofferenza and Coordinating Center for Italy, under the guidance of Principal Investigator Prof. Ferdinando Squitieri.
07/12/2020
This is the title of LIRH FoundationAnnual Conference, which will take place online on Saturday 12 December from 10.00 to 13.00 am (CEST)
Also this year, on time like every other year, we will provide a comprehensive overview of the main clinical trials on Huntington's disease; a rare disease still lacking of a definitive cure, but towards which interest is strongly growing on the part of both researchers and the pharmaceutical industry.
3/12/2020
Hey you, yes you, can you read the text?
... try turning the screen and reading it from another perspective.
