Generale

Today, March 8, 2024, we are not only celebrating the international Women's Day, but also the birth of a new Association, named LIRH Friuli Venezia Giulia, thanks to a women, Annarita! The 'LIRH family' keeps growing.

Please, meet Annarita:

"My name is Annarita, 52 years old. I am a nurse. I have thirty years experience in the field of General Medicine. I currently work in Radiology, dealing with Magnetic Resonance Imaging and CT scans. I would describe myself as an empathetic person, with an expansive and "explosive" character.

The Rare Disease Day 2023  theme is the metaphorical 'journey' that a person with a rare disease takes before receiving the diagnosis. This 'journey', in European Countries, lasts about 4 years.

LIRH Foundation, as always, supports the official Eurordis campaign, implemented in Italy through Uniamo - the Italian Federation of Rare Diseases and contributes with its own specific message.

The last five years have led to great milestones in the history of Huntington's disease research. At least three can be highlighted:

1) The setting up of the largest research network ever created for a rare disease, capable of connecting researchers from all over the world;

2) The launch of experimental therapies potentially capable of modifying the course of the disease by directly affecting its cause;

The Abbey of San Miniato al Monte, one of the most visited places by people from all over the world, a splendid synthesis of art, spirituality and history, together with the Municipality of Florence, participates in the International HD Awareness Month through a symbolic initiative of great significance: on Thursday 26 May at 9.30 pm the Abbey will light up in purple magenta, the color of the LIRH Foundation - and will remain illuminated also the following evening - to testify proximity to those who face and fight Huntington's disease.

In the HD Awareness Month, LIRH Sardinia Association promotes a meeting open to Huntington families, to share spaces and times, thoughts, needs and information on the current available therapeutic options and on the disease management.

"Sardinian families have been isolated for too long." - said Alessia Zurru, President of the LIRH Sardinia Association - The time has come, also for us, to be taken in charge and to access experimental programs ".

On the occasion of World Rare Disease Day 2022, we asked HD patients, researchers and practitioners what color they associate with Huntington's disease and why.

we are the italian league for research on huntington disease and these are our colors!!

Pubblicati i risultati dell'ultima survey di Eurordis sul futuro delle malattie rare, da cui emergono spunti molto interessanti

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:

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.