ACTIVITY PROGRAMME

1) Surveys will be led - by the Group members in those health facilities where they are followed - to know if other "Goldenhar Syndrome" cases exist, and if it is possible to get in touch with them. Privacy will be strictly respected.

2) Hospitals will be informed of the presence of the Italian Goldenhar Syndrome Group, of it site and e-mail address.

3) REGIONAL REPRESENTATIVES will be appointed in those Regions where the Group has none, yet.

4) Local representatives will request REGIONAL AUTHORITIES to identify "Specialised Centres" in compliance with law n.279/01 passed on 18 May 2001, as regards Goldenhar Syndrome.

5) Creation of an informational net devoted to those High Specialisation Centres whose HIGH and TESTED EXPERIENCE can SOLVE problems connected to the Syndrome.

6) Contacts with foreign Associations and families will start to exchange information and experiences.

7) A team of SCIENTIFIC COLLABORATORS co-ordinated by Doctor AMNON COHEN, Head Physician of the Paediatric Department in the "SAN PAOLO" Hospital in SAVONA

(Italy), will be created.

8) Data dealing with those single problems caused by Goldenhar Syndrome and present in all known cases will be processed for statistical purposes.

9) Meetings between Group members - and non-members, as well - will be organised.

10) Meetings will be organised with Specialists in problems connected to the Syndrome.

11) A research project on the causes of Goldenhar Syndrome will start in collaboration with Foreign Associations and Facilities.