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Euro Huntington's disease network [logo]
Meeting 2014/01 -

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