La Fondazione LIRH onlus promuove ogni anno iniziative di informazione e divulgazione. Di seguito troverai elencate tutte le nostre iniziative.
21/09/2020
On the last September 16th and 17th 2020 we took part in the 'c4c Workshop for Patients and Patient Organizations' addressing aspects related to the ethical implications and regulatory aspects of children and young people (CYP) involvement in clinical trials. We also had the opportunity to discuss the methodology behind the design and the carrying out of a clinical trial, as well as the structure and contents of research protocols.
18/09/2020
15/07/2020
Identified the Mmutated HTT and haplotype of the African ancestor who spread Huntington disease into the Middle East from sub-Saharan Africa , that at the beginning of the 1900s spread Huntington into the Middle East from South Africa,with determining in that area the highest concentration of HD Huntington and juvenile-onset Huntington disease in this part of the world, now identified.
22/06/2020
In an official press release of June 3, 2020, Prilenia Therapeutics, a biotech company focused on developing new treatments for neurodegenerative and neurodevelopmental disorders, announced that it has raised $ 62.5 million to fund two clinical trials, one in HD and one in Amyotrophic Lateral Sclerosis (ALS).
“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.
by Ferdinando Squitieri
articolo eng
We are happy to share with you the latest news on the Generation HD 1 study from Roche.
In summary: the total number of participants will increase from 660 (already enrolled) to 801 and the study will be extended also to China.
This expansion will strengthen the clinical, scientific and statistical value of data relating to the two different dosages of drug being administered: one administration every eight weeks (2 months) versus one administration every 16 weeks (4 months), for an observation period of 25 months.
The EHA Conference EHA ended a few days ago and the sense of belonging, sharing and hope that permeated this three days in Bucharest, Romania is still strong in us.
The conference brought together over two hundred people from many different Countries, not only from Europe: representatives of patient and research organizations, patients, family members, partners, nurses, physiotherapists, music therapists, dentists, psychologists, rehabilitation therapists met, recognized and compared on the most frequent needs of HD patients in their daily lives.
