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PROGRAM OF THE GENETIC TESTING AND COUNSELLING WG MEETING Rome, January 30th-31st Hotel Roma Nuova Nord, Via Giovanni Amendola 3 January 30th 9.00-9.15 Welcome (Marina Frontali) 9.15- 10.00 Update on activities since last meeting (Rhona MacLeod, Aad Tibben, Marina Frontali) 10.00 - 10.30 Alison Metcalfe: a research project on intrafamilial communication 10.30- 10.45 Coffee Break 10.45- 11.45 General discussion on a research project about intrafamilial communication and formation of a discussion subgroup 11.45 - 12.15 Martin Delatycki and members of HDYO/WGs YA and GTAC: a collaborative project on predictive test service delivery 12.15 - 13.15 General discussion on proposal for a predictive test service delivery project and formation of a discussion group 13.15 - 14.15 Lunch 14.15 - 15.15 Other proposals for future activities 15.15 - 17.30 Subgroup meetings (with coffee break)
January 31st
9.00 – 10.00 Report from the subgroup on intrafamilial communication and general discussion 10.00- 11.00 Report from the subgroup on service delivery and general discussion 11.00 - 11.15 Coffee break 11.15 – 13.00 General discussion and Conclusions New SUBGROUPS
| SUBGROUP 1. INTRAFAMILIAR COMMUNICATION |
| SURNAME |
NAME |
| Bjørnevoll |
Inga |
| Blinkenberg |
Ellen |
| Bombard |
Yvonne |
| Boogaerts |
Andrea |
| Davis |
Mary |
| De Schepper |
Beatrice |
| Downing |
Claudia |
| Frontali |
Marina |
| Goldman |
Jill |
| Ignatius |
Jaakko |
| Keenan |
Karen |
| MacLeod |
Rhona |
| Martínez Descals |
Asunción |
| Mendes |
Álvaro |
| Metcalfe |
Alison |
| Moldovan |
Ramona |
| Nemeth |
Andrea |
| Randhawa |
Kashmir |
| Tibben |
Aad |
| Van der Meer |
Lucienne |
| Van Tongerloo |
Ariane |
| Zinzi |
Paola |
| Martin |
Catherine
| | | SUBGROUP 2. PT SERVICE DELIVERY -MINORS
| SURNAME |
NAME |
| Bijlsma |
Emilia |
| Bjørnevoll |
Inga |
| Blinkenberg |
Ellen |
| Bombard |
Yvonne |
| Borry |
Pascal |
| Bradbury |
Alison |
| Delatycki |
Martin |
| Frontali |
Marina |
| García-Barcina |
María |
| Krysa |
Wioletta |
| MacLeod |
Rhona |
| Mandich |
Paola |
| Sulek-Piatkowska |
Anna |
| Tibben |
Aad |
| Trujillo-Tiebas |
Maria José |
| Ugander-Hosterey |
Ulrika |
| Van der Meer |
Lucienne |
| Verschuuren-Bemelmans |
Corien |
| Zinzi |
Paola |
| Ellison |
Mattew |
| Klimontowicz |
Marianna |
SUBGROUP 3. TRANSITION TO CLINICAL DIAGNOSIS
| SURNAME |
NAME |
| Frontali |
Marina |
| Evers Kiebooms |
Gerry |
| García-Barcina |
María |
| Keenan |
Karen |
| MacLeod |
Rhona |
| Metcalfe |
Alison |
| Moldovan |
Ramona |
| Randhawa |
Kashmir |
| Richards |
Fiona |
| Roos |
Raymund A.C. |
| Tibben |
Aad |
| Trujillo-Tiebas |
Maria José |
| Zinzi |
Paola |
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