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 |
