Program
Day 1 – April 12 (Friday) – Évora
University Auditorium
10:00 – Opening Session
10:15 –Session 1 – Persons
Table 1 – News from SXF
Chair: Vítor Franco, U.Evora
Past, present and future of research and intervention in SXF
Donald Bailey (RTI Internacional, USA)
(11:15-11:30 – Coffee break)
Table 2 – Clinical and Genetic Approaches
Chair: Isabel Cordeiro, Hospital S. Maria, Lisboa
The fragile X syndrome – from the diagnosis to the Robotics
Paula Jorge (Centro de Genética Médica Dr. Jacinto Magalhães, Porto)
Filomena Soares ( Centro Algoritmi, Universidade do Minho )
SXF – clinical practice and actual challenges
Márcia Pinho Martins (Centro Hospitalar Trás-os-Montes e Alto Douro)
13:00 – Lunch
14:30 – Session 2 – Contexts and processes
Table 3 – Clinical Contexts
Chair:: Madalena Melo, U.Évora
The practicioner – patient relationship in disability
Jorge Cruz (Hospital da Arrábida, Porto)
Research on pharmacological treatment of FXS
Cristina Lopez Lopez (Novartis, Suíça)
(15:30-15:45 Coffee break)
Table 4 – Persons with FXS in their contexts
Chair:: Heldemerina Pires (U. Évora)
Fragile X caught in the middle: Challenges of optimising support for people with Fragile X Syndrome
Jörg Richstein (Associação de Familias com SXF, Alemanha; European Fragile X Network)
Inclusive Education – an ecological approach
David Rodrigues – Instituto Piaget (Almada), President of Pro – Inclusion – National Association of Teachers in Special Education)
Autonomy in SXF: Possibilities and Limits
Ruth Rissin (Associação SXF do Rio de Janeiro, Brasil)
17:00 – Oral Presentations
Room 1- Chair: Graça Santos (U. Évora)
Room 2- Chair: Marta Flores (ASXFEX)
Day 2 -13 April (Saturday)-Alandroal
Forum Cultural Transfronteiriço
10:00 – Session 3 – Paths of Life
Mesa 5 – Diferent faces of SXF
Chair: Fátima Ferreira, ARS Alentejo
Challenges of cognitive impairment to social inclusion
Ana Catarina Prior (Centro de Desenvolvimento Infantil do Porto; Centro Hospitalar do Porto)
Fragile X Syndrome and Autism
Pedro Cabral (Centro Hospitalar de Lisboa Ocidental; Cadin, Lisboa)
(11:00- 11:15 – Coffee break)
Table 6 – interventions and trajectories:
Chair: Ana Apolónio, ARS Alentejo
Early intervention in SXF
Donald Bailey (RTI International , USA)
Going out of school and professional inclusion
Augusto Sousa (Rumo; Associação Portuguesa de Emprego Apoiado)
The life course of persons with FXS in Portugal
Vitor Franco (Universidade de Évora)
13:00 – Almoço
14:30 – 14:30 – Session 4
Sala 1 – Workshop for families
Eduardo Brignani (Associação SXF Espanha, Barcelona)
Sala 2- chair: Carla Carmona (U. Évora)
Oral presentations
Posters session
16:30- Closing Session
José Madeira Serôdio
(Presidente, Instituto Nacional para a Reabilitação)
João Grilo
(Presidente da Câmara Municipal de Alandroal)
SOCIAL PROGRAM
(under construction)
PROGRAM FOR CHILDREN AND YOUNG ACCOMPANYING
(under construction)