Manzoni Hospital: 'Voices of the Huntington Community' on 28 -

Manzoni Hospital: "Voices in the Huntington Community" meeting on the 28th

On the morning of Saturday, March 28, the Aula Magna of the Alessandro Manzoni Hospital in Lecco will host the event "Voices of the Huntington Community: Needs, Rights and Responses", promoted by the Huntington Association - the Italian Network for Huntington's Disease with the support of the healthcare institution.

The meeting, which is intended for families, professionals and representatives of services and institutions, but also open to the territory, aims to foster a network that can take care, while waiting for treatment, in accordance with what is also reported in the Charter of Rights of Huntington's disease: "the right to receive children, listen, information, multidisciplinary support for children and in relation to the disease in all its disease stages and symptoms."

After the institutional greeting, the video message of the Minister of Disability Affairs C. Alessandra Locatelli, co.

After this, the first time will be given to the presentation of a study about the experiences and needs of the Huntington community in Italy by Claudia Villa, Italian Coordinator for Moving Forward (EHA), who explains: "We believe that the first step is to listen to everyone's stories and build relationships to make it clear that no one is alone, those who are affected by this diseasecan rely on the help of each of us can share, because of the determination of matters that are important for each of us.feelings.

The research, designed and carried out as part of the European EHA Moving Forward project in collaboration with the Huntington Onlus Association, gathered views from over 160 people with a direct interest.

This was followed by a round table discussion on “Multidisciplinary and multilateral network for the treatment of Huntington's disease, fundamental approaches to caring for the patient and his family.”

As stated in the poster, representatives from professionals, associations, services and organizations, patients and their families will talk together. The event - sponsored by the Municipality, ASST, Lecco of Provincial Surgeons and Dentists, Order of Psychiatrists of Lombardy, Telethon Foundation, Omar and Rare Disease Alliance - will start at 9.30 in the morning and end at 1.00 pm.Admission is free and free.For organizational reasons it is necessary to disclose your presence at this link.

Huntington's disease is a hereditary degenerative disease of the central nervous system that causes neurological damage in the basal ganglia and cerebral cortex, which regulates movement and cognitive function.It is included in the Istituto Superiore di Sanità's list of rare diseases: ID number is RF00 80.

The onset usually occurs between the ages of 30 and 50. The course of disability is slowly progressive and fatal after 16-20 years of illness: clinically it is characterized by involuntary pathological movements, serious behavioral changes and cognitive impairment.Until now, there are no drugs that can prevent, prevent or slow the progression of the disease: the currently available substances, although useful, have only a symptomatic effect.

Inheritance is autosomal dominant and gene transmission is independent of sex. This means that each child has a 50% chance of inheriting the mutated gene.

Huntington is a second name given to a person by fate: a family legacy that accompanies them and becomes an integral part of their identity.Thanks to the discovery of the gene whose mutation causes the disease, a genetic test defined as predictive can be used to identify who is the carrier and inevitably manifest the symptoms: on the contrary, those who are not carriers will not have and will not transmit the disease.

Huntington's is a social reality.The needs are many, sufferers share them with their family and caregivers, and they change in the long term that shows the disease: mental, health, social, emotional, material needs.And behind the scenes: the humiliation and shame, silence and denial that families live with today.

The conference, intended for families, professionals and representatives of services and institutions, but also open to the territory, aims to nurture a network that can care, while waiting for treatment, in accordance with what is stated in the Bill of Rights of Huntington's disease: "The right to welcome, listen, inform, support the numerous professions of the disease, the influence of the whole family and their children.

After the institutional greetings, a video message from the Minister responsible for Disability, Hon. Alessandra Locatelli, will be shared.

After that, for the first time will be dedicated to the presentation of research on the experiences and needs of the Huntington's community in Italy, by Claudia Villa, Coordinator of Italy - AHA, who explains: "We believe that the first step is to listen to the story of each individual and to create relationships, to make it clear that no one is alone, and that each patient can help us to help those affected by this disease. Important and we light each emotional songAllows to get.

Researched, conceptualized and carried out as part of the European EHA Moving Forward project in collaboration with the Huntington Anals Association, it gathered the views of more than 160 directly interested parties.

This is followed by the round table "Multidisciplinary and multi-actor network of Huntington's disease, fundamental approach to the care of the patient and his family".

Representatives of professionals, associations, services and companies, patients and their families are working together as shown on the poster. This event - sponsored by the community, ASST, Provincial Order of Surgeons and Dentists of Lecco, Order of Psychologists of Lombardy, Telethon Foundation, Omar and Rare Disease Alliance - will start at 9.30am and end at 1.00pm.Entry is free and open.For organizational purposes, declare your presence at this important link

Huntington's disease is an inherited neurodegenerative disease that causes damage to neurons in the basal ganglia and cortex, the parts of the brain that control movement and higher-order functions.It is included in the list of rare diseases of the Istituto Superiore di Sanità: identification is RF00 80.

Usually begins between the ages of 30 and 50.The disability progresses slowly and fatally after 16 to 20 years of disease: clinically it is characterized by pathological involuntary movements, severe behavioral changes and cognitive decline.So far, there are no drugs that can prevent, prevent or slow down the progression of the disease: substances currently available, although useful, have only a symptomatic effect.

Inheritance is autosomal dominant and transmission of the gene is independent of sex: this means that each child has a 50% chance of inheriting the mutated gene.

Huntington is the person's second name: the family heritage follows them and becomes an important part of their identity.Because of the discovery of the gene whose mutations cause the disease, it is possible to know through genetic testing, which is defined as a prediction, who is a carrier and will show unusual symptoms: on the contrary, those who are not carriers will not have or transmit the disease.

Huntington's disease is a social fact. These needs are multiple, accepted by patients and their families and caregivers, and they change over time as the characteristics of the disease develop: psychological, health, social relationships, help, material needs. And then in the situation: today families still live with shame and embarrassment, silence and denial.

This is how the organization presents itself.

Attention to detail is in our DNA. With this desire, we founded the HUNTINGTON Society in 2018, the Italian network of Huntington's disease, a historical reality of Milan, which took its first steps in the 70s, in association with AICH Milano Onlus.

A common project: to join forces to increase energy in the region, to build and maintain a network that can be a resource, closeness, for all people affected by the disease, such as Huntington's families, research professionals, treatment and support, institutions.promotes awareness of their needs and rights".

We offer free services such as individual psychological support, support groups, social-health and legal referral desks.

Saturday, 28.03.2026