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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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