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)