Informazione

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“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.

On Sunday, 8 September 2019, the second meeting among the HD families living in Puglia Region (Southern Italy) was held in Bari. The meeting was promoted by LIRH Puglia Association, formally established soon after the first meeting was held, in June 2018. 

 

 

The scientific committee of the Foundation has considered worthy of the LIRH Huntington Disease Research Award 2018 Dr. Caterina Fusilli, first author of the article "Biological and clinical manifestations of juvenile Huntington's disease: a retrospective analysis".