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.
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.
14/10/2020
22/06/2020
Since the beginning of the "Coronavirus emergency", many organizations and institutions have promoted initiatives aimed at bringing out the needs of rare patients and patients.
We are well aware, however, that patients are not all the same, not only because the diseases are different, but simply because, the people affected are not the same, they remain different, even when affected by the same pathology, as in the case of a complex disease such as Huntington's disease.
“To care for another person, in the most significant sense, is to help him grow and actualise himself… Caring is the antithesis of simply using the other person to satisfy one’s own needs.”
(Mayeroff, 1971)
Again this year, we were invited to participate to the annual international event dedicated to Patient Associations promoted by Roche : the International Experience Exchange with Patient Organizations (IEEPO 2020), entitled "From Chance to Choice: Creating the Future of Healthcare Together ". Central topic: personalized medicine.
