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Thanks to artificial intelligence, a drug has been discovered to be tested in the treatment of the "chorea" symptom in Huntington's disease: it is called SOM3355
Thanks to artificial intelligence, a drug has been discovered to be tested in the treatment of the "chorea" symptom in Huntington's disease: it is called SOM3355
The US Food and Drug Administration has just granted orphan drug designation to SOM3355, an investigational drug for the treatment of chorea (involuntary jerking movements) in patients with Huntington's disease.
The risk of suicide in Huntington's disease is very high. It is therefore necessary to monitor patients behaviors with due attention in order to prevent extreme situations.
The risk of suicide in Huntington's disease is very high. It is therefore necessary to monitor patients behaviors with due attention in order to prevent extreme situations.
The results of a study describing a link between specific changes in behavior and cognitive abilities in patients with Huntington's disease have been published in the journal Brain and Behavior.
Open The results of a study describing a link between specific changes in behavior and cognitive abilities in patients with Huntington's disease have been published in the journal Brain and Behavior. configuration options
The results of a study describing a link between specific changes in behavior and cognitive abilities in patients with Huntington's disease have been published in the journal Brain and Behavior.
Pubblicati i risultati dell'ultima survey di Eurordis sul futuro delle malattie rare, da cui emergono spunti molto interessanti
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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.
