Italian Sotos Syndrome Association
To whom it may concern,
we are pleased to announce that a group of dedicated parents have created the Italian Sotos Syndrome Association, hereby known as “A.S.S.I. Gulliver”, with the purpose of:
- Collecting information in relation to the various terapies used to treat the syndrome.
- Promoting and organising meetings between parents and families of people with Sotos Syndrome. These meetings are of great importance, where the objective is to help each family deal with the various issues that we face and to overcome common problems through a joint effort.
- Establishing and maintaining connections, relationships and interaction between families, professionals, volunteer associations (public and / or private) and any other Social Assistance Associations.
- Creating a network of collaboration between the Association and the various research laboratories and reference centers for this syndrome with the objective of improving the automatic exchange of information and the creation of standard protocols.
- Creating an assistance & advice service to inform patients of their rights and opportunities in order to help them be as autonomous as possible.
- Creating of a network of collaboration between the Association and the various research laboratories and reference centers for this syndrome.
- Assistance and advice with any bureaucratic issues in relation to legislative, operational, security and welfare concessions for patients and their families
- Contributing to the organisation of summer camps specialising in assisting people with disabilities and specifically patients with Sotos Syndrome.
- Disseminating personal experiences and providing information material to families who have recently been given the diagnosis or for those who have been searching for information without success.
We have created the following websites / facebook pages:
Facebook page: Gruppo Sotos Sindrome Italia : http://www.facebook.com/groups/92625373170/
You can also email us at:
For general information: Info@assigulliver.it
To contact the President & General Counsel: firstname.lastname@example.org