The primary purpose of the group is to provide support to the genetic fatal insomnia sufferers and to their relatives, and to succeed in this we believe that it is really important to gather in the association all the Italian genetic fatal insomnia sufferers.
The genetic fatal insomnia is a “rare disease”, still little known. When you find yourself for the first time to face the world of rare diseases, you feel lost, you don’t know where to turn for information also purely practical. We think that know that an association of people with whom share our disease, our anxiety, our fears, but also our joy and victories exists, can be very important.
Our main goal is to be able to bring together in our association all the people that currently suffer from genetic fatal insomnia in Italy.
We believe that we can take help from the life experience of each of us.
The group meets regularly each month and during the meetings we will exchange experiences, we provide information about our rights, about the structures to which we can turn, and we discuss the new goals of scientific research.
Genetic fatal insomnia is a “rare disease” and this can often make you feel ALONE; we do not want that to happen. We try to create a large group, HELP US TO MAKE PEOPLE HEAR OUR VOICE.
We want to try to raise awareness about our problem, try to raise funds for medical research, but in order to do this we need the support of everyone.
HELP US TO CREATE OUR GROUP.