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Huntington, the campaign “I give you my word” ends successfully

The national awareness campaign on Huntington’s disease “I give you my word”, which we promoted throughout Italy from May to mid-June, ended with great participation. A widespread mobilization, including public events, cultural activities and online campaigns, has turned the spotlight on this rare, neurodegenerative, hereditary genetic disease that is still little known, but which directly involves thousands of Italian families.

“Preserving the Brain: A Call to Action” - part of the Human Brains project promoted by Fondazione Prada in 2018 - aims to focus on the importance of prevention and early treatment of widespread and still incurable diseases, such as Alzheimer’s, Huntington’s, Parkinson’s, Amyotrophic Lateral Sclerosis, and Multiple Sclerosis. 

"Perugia, 13 August 2024 - LIRH Umbria was officially born today. It all started from the desire to help and support HD affected individuals and their families. With our personal experience, we want to be, in our territory, the guide that is missing among doctors, hospitals and bureaucracy. We want to be the thread that unites us with the LIRH Foundation and with prof. Ferdinando Squitieri, for years alongside families with Huntington's disease who, together with his staff, support all of us as a researcher and as a physician".

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