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Final Programme

 


26th April – Thursday / 26 Abril – Quinta-feira
15.00 - 19.00h Meeting’s check in and registration / Recepção dos participantes
17.00 - 19.00h Lay group meeting / Reunião das Associações
19.00h Departure from Culturgest / Partida da Culturgest
19.30h Reception at the City Hall of Lisbon / Porto de Honra oferecido pela CML
20.30h Departure to Culturgest / Regresso à Culturgest

27th April – Friday / 27 Abril – Sexta-feira
09.00 - 9.15h Opening Ceremony/Cerimónia de Abertura
 
Session 1 - Sessão 1
Chairperson/Moderadores – Ana Medeira and Gareth Evans
09.15 - 09.45h Introduction – Lucia Lemos and Isabel Cordeiro
09.45 - 10.15h The NHI Neurofibromatosis classification and diagnostic criteria: time to rethink? – Susan Huson
10.15 - 10.45h Clinical and neuropsychologic phenotypes – Pedro Cabral
10.45 - 11.15h Molecular abnormalities in atypical neurofibromas - Eric Legius
11.15 - 11.45h Coffee break / Café
 
Session 2 / Sessão 2
Chairperson – Meena Upadhyaya and Ludwine Messiaen
11.45 - 12.15h Mosaicism in NF2 an update of risk based on uni/bilaterality of vestibular scwannoma at presentation and sensitive mutation analysis including MPLA - Gareth Evans 
12.15 - 12.45h NF2 – Management and disease - Gareth Evans
12.45 - 13.00h Asociación de Afectados de Neurofibromatose - Pilar Munoz
13.00 - 14.00h Lunch / Almoço
 
Session 3 - Sessão 3
Chairperson – Vincent Riccardi and Eric Legius
14.00 - 14.30h Whole transcriptional analysis of NF1 – Nancy Ratner
14.30 - 15.00h Analysis of NF 1 genotype/phenotype studies – Meena Upadhyaya
15.00 - 15.30h Update on genetic testing for NF 1 patients and segmental NF 1 - Ludwine Messiaen
15.30 - 16.00h High Resolution Melting (HRM) analysis for the rapid and sensitive detection of mutation in NF 1 samples - Sukriye Ayter
16.00 - 16.30h Topic to announce / Tema a definir - Luis Parada
16.30 - 17.00h Coffe break/ Café 
 
Session 4 - Sessão 4
Chairperson – Meena Upadhyaya and Weindong Li 
17.00 - 17.30h Development on Neurofibroma formation – Nancy Ratner
17.30 - 18.00h Dysplastic neurofibromas in Neurofibromatosis 1 : Histological criteria and prevalence - Laurence Valeyre- Allanore
18.00 - 18.30h The interest of F18 desoxyglucose emission tomography in detection of neurofibroma in NF 1 patients - Benoit Bensaid
 
19.30h Departure from Culturgest – Partida da Culturgest 
20.00h Dinner at Timpanas Restaurant with fado and folklore dances / Jantar no Restaurante Timpanas com fado e folclore 
23.30h Departure to Culturgest – Regresso à Culturgest 

28th April – Saturday / 28 de Abril – Sábado 
Session 5 - Sessão 5
Chairperson – Isabel Cordeiro and Luis Parada
09.00 - 09.30h Amelioration of cognitive defects in animal model of NF 1: From mechanism to targeted treatment of the Ras/MAPK pathway – Wendong Li
09.30 - 10.00h Prosody. The real learning disability of NF 1 – Vincent Riccardi
10.00 - 10.30h  The impact of Neurofibromatosis 1 upon Quality of Life in Childhood: A cross sectional study of 79 cases – Pierre Wolkenstein
10.30 - 11.00h Behaviour and Health related quality of life (HRQOL) in school aged children with Neurofibromatosis type 1 - Lianne C. Krab
11.00 - 11.30h Coffee break / Café
 
Session 6 - Sessão 6
Chairperson - Susan Huson and Nancy Ratner
11.30 - 11.55h NX101- Development of a Non-Cirurgical Treatment for Dermal Neurofibromas in Neurofibromatosis type 1 - Alan Rubenstein
11.55 - 12.20h Conditionally Replictive Adenovirus as a Potential Therapy for NF1 – Vivianne Ding 
12.20 - 12.40h Signal therapy for NF-associated tumours by Natural PAK1 Blockers – Maria Demestre
12.40 - 13.00h Facial transplant for plexiform neurofibroma - Laurent Lantieri
13.00 - 14.00h Lunch / Almoço
 
Session 7 - Sessão 7
Chairperson - Michael Lewis and Lucia Lemos
14.00 - 14.30h Orthopedic aspects in NF1 – Francisco Santana
14.30 - 15.00h Model care for Adults with NF1 – Susan Huson
15.00 - 16.00h Posters session / Sessão de Posters
Film exhibition - “Being different .... Does it matter ????” / Exibição de video “Ser diferente ... Que diferença faz ? “ 
Brasilian Neurofibromatosis National Centre – Rio de Janeiro, Brasil
16.00 - 16.30h Coffee break / Café
 
17.00h Departure from Culturgest – Partida da Culturgest 
17.30h Free time visit to the "Mosteiro dos Jerónimos" and "Torre de Belém" – Tempo livre para visita aos Jerónimos e Torre de Belém 
18.45h Meeting point at Belém Docks – Encontro nas Docas
19.00h Cruise on River Tagus (Cocktail and diner included) – Cruzeiro no Tejo (inclui cocktail e jantar)
22.00h Departure to Culturgest – Regresso à Culturgest 

29th April – Sunday / 29 de Abril – Domingo
Session 8 - Sessão 8
Chairperson - Isabel Cordeiro and Lucia Lemos
09.00 - 09.30h Living with NF 1 - Michael Lewis
09.30 - 10.00h NF 1: The lost years – Clare Webb 
10.00 - 10.30h A novel service for adolescents and young adults with neurofibromatosis 1 - Rosalie Ferner
10.30 - 11.00h Coffee Break
11.00 - 11.30h Conclusions
11.30 - 12.00h Report of NF Europe - Clare Webb
12.00 - 12.30h Next meetings
12.30h Lunch Box

 

Invited speakers / Prelectores convidados

Eric Legius - Belgium
Francisco Santana – Portugal
Gareth Evans – UK
Ludwine Messiaen – USA
Luis Parada – USA
Meena Upadhyaya – UK
Michael Lewis – Portugal
Nancy Ratner – USA
Pedro Cabral – Portugal
Susan Huson – UK
Vincent Riccardi – USA
Weidong Li – USA

 

 

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