get involved in research programs
Today, even more than in the past, research needs the contribution of patients and their families. Participating in clinical and observational research programs means giving your time a value that will be returned in the form of a possible cure. The important discoveries achieved so far have been made by thousands of people around the world who voluntarily donate blood, tissue or other biological samples and regularly share information about their health status with researchers and clinicians.
participate in our surveys
Help us gather the information needed to improve the quality of life of patients, family members, caregivers and the entire Huntington community. The Surveys are investigations on specific aspects related to your experience with the disease. Participating simply means completing an online questionnaire. It is a matter of a few minutes of your time, which are of immense value to us.
Participate to the survey "How did we experience Huntington as children?"
It consists in gathering information on lifestyle and health conditions, through questionnaires and evaluation scales validated by the international scientific community and in taking blood samples once a year. People who are aware that they carry the mutation, people who do not know their genetic conditions, as well as those who tested negative to the genetic test or simply unrelated relatives can participate. Reimbursement of expenses for participation is provided.
It consists of collecting the same information as Enroll-HD, with the addition of a simple lumbar puncture to the blood sample, following the same procedure that is used in epidural anesthesia. People who agree to join Enroll-HD can participate. Reimbursement of expenses for participation is provided.
It is the first large collection of clinical, genetic and neuro-radiological information with innovative brain imaging technologies associated with the biological study of the connections of the nervous system in early juvenile and pediatric Huntington's Disease. RAREST-JHD is the first project that aims to compare Huntington's Disease in children and adolescents with that of adults, funded by the Ministry of Health at IRCCS Casa Sollievo della Sofferenza, with which LIRH has forged a framework collaboration agreement.
JHUMP (Juvenile Huntington Modular Project)
It consists in the development of an artificial intelligence tool for the clinical evaluation of children with Huntington's Disease. The project aims to validate a method that allows to obtain markers of the disease progression in the pediatric condition, which is very different from the adult one.
Beyond Movement Disorders
It consists of the evaluation of the subcortical functions in patients with Huntington's Disease or at risk, as carriers of the mutation, in an attempt to identify possible clinical markers of the disease course based on the stage of the pathology. The study leverages innovative tools to determine alterations in executive functions and explores the possibility of analyzing cognitive rehabilitation procedures
join the Huntington Cafè
The Huntington Café is an initiative that was created to provide patients affected by the disease an informal meeting place where they can talk, over a cup of tasty coffee, offered by us.
What can you do in the Huntington Cafè?
We get to know each other, we exchange experiences, we discuss various topics, chosen or proposed from time to time by you, by the participants.
What are the objectives?
The objectives are many: to promote relationships, combat isolation, break the tiring treatment routine, share problems and strategies to solve them, learn more about the disease and available resources. You feel less alone if you share your emotions with those who can understand them.
Where does the Huntington Cafè' take place?
The Huntington Café takes place at the headquarters of the LIRH Foundation, in Via Varese 31, Rome (Metro A Termini stop). The meetings are scheduled on Saturdays, from 10.00 to 12.00 AM.
How to partecipate?
If you are interested in participating, please let us know by calling the toll-free number 800.388.330 or by sending an email to email@example.com.
Join the project "That Disorder"
"That Disorder" - Photography Project on Huntington Disease (HD) aims to make people understand what it means to live with Huntington's disease - a rare, neurodegenerative, genetic, hereditary, not very much known and much feared disease - through the pictures and stories of those who are personally involved.
Share your story, join the project