Giorgia has offered to make her positive yoga experience available to other people living in contact with Huntington's disease.
Giorgia has offered to make her positive yoga experience available to other people living in contact with Huntington's disease. We have collected his testimony:
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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.
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.
3/12/2020
Hey you, yes you, can you read the text?
... try turning the screen and reading it from another perspective.
Good, now we are already on the right track.
by Ferdinando Squitieri
The last week of August we went to San Giovanni Rotondo, Puglia Region.
We wanted to meet the team and the patients involved in the Generation HD1 study, currently being held at Casa Sollievo della Sofferenza Hospital, Huntington and Rare Diseases Unit.
