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The Genetically Based Neurodevelopmental Disorders research groupof the Institute of Research and Innovation Parc Taulí and the Pediatric Neurology Unitof the Parc Taulí that works in research and assistance for patients with Angelman Syndromeorganize a European workshopwith the aim of improving the clinical approach and research of this minority disease from an international multidisciplinary perspective.
The conference, which is held in a hybrid form at Fira Sabadell and in a virtual format, brings together for the first time in Catalonia professionals from expert centers in Angelman Syndrome from all over Europe, and has the recognition of the European Joint Program for Rare Diseases and the active participation of patients' families from all over Europe and Latin America.
Program
Day 1 – Thursday, June 29
- 08:45h Welcome, organizers and a representative of the family associations
- 09:00am What is it like to access a specialized center in different countries in Europe, the experience of parents from 3 different countries.
* Clinical Experience Unit Sabadell, Spain. Carmen Manso
* Experience of three European families. - 10:00 a.m. Coffee break
- 10:30 a.m. Global care of Angelman Syndrome (1). Moderator: Ana Roche
* Update on preclinical and clinical studies. Laurent Servais
* Genotype and phenotype. Sofia Ourani
* Epilepsy in SA.
– Epilepsy. Marie Claire DeWitt
– EEG characteristics. Federico Vigevano, Nicola Pietrafusa
– Practical aspects of EEG performance in children with AS. Susana Torres, Sandra Jara
– Sleep disorders in SA. Karen Bindels de Heus - 12:30 pm Colloquium
- 13:30 pm Working lunch
- 15:00h Global care to SA (2) Moderator: Argyris Dinopoulos
– Global care for children. Karen Bindels de Heus
– Global care for adults. Sabela Novo
– Non-pharmacological treatments. Ariadna Ramirez
– Language and communication. Cindy Navis
– Neurorehabilitation in SA. Michelina Armando - 17:00 End of the first day
Day 2 – Friday, June 30
- 09:00h Research studies in progress. Moderator: Neus Baena, Miriam Guitart
* Basic research update. Hugo Mayor
* Self-promoted studies.
* Study of Natural History or AS in Spain. Neus Baena, Debora Itzep
* Spleep and AS. Marta Moraleda
* Hyperphagia, growth and puberty and bone health. Karen Bindels de Heus - 11:30 a.m. Coffee break
- 12:00h Studies promoted by pharmaceutical companies. Roche, Ultragenyx
- 13:30 pm Working lunch
- 15: 00h - 17: 00h
Forum of professionals
– Clinical care consensus, clinical care units
– Compare resources in different countries (Spain, Cyprus, Greece, Holland) and see what can be improved in different places, based on different experiences
– Discuss about the Angelman syndrome database
– “Nina” Unit of clinical expertise Netherlands
– Establish a virtual meeting calendar
Family forum
– How to go straight and fast, how to stay together – Patient associations ASA and FAST-Spain, AS Alliance
– Contact patient associations from different countries
Addressed to:
- Professionals and families of patients with Angelman Syndrome
Espai Cultura Fundació 1859 Caixa Sabadell
Bon dia,
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