malattia di huntington

Huntington Disease (HD): Let’s color our voices! - Rare Disease Day 2021

Huntington, Diamo Colore alle Nostre Voci! - Giornata Mondiale Malattie Rare 2021

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. 

Huntington e COVID-19: the LIRH's Foundation survey to measure the impact of the emergency on the families involved

Coronavirus e Huntington suvery online

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.

 

Having the same disease doesn't mean to be the same patient: towards an era of personalized medicine

medicina personalizzata cura malattia di Huntington

“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.