II STXBP1 Syndrome Congres – Program and Registration

On June 3 and 4 we organize the II STXBP1 Syndrome Congress in Barcelona, ​​in the Ágora Room of the Cosmocaixa.

You can register for free here (limited capacity).

Program:

Day 1 – Friday June 3.

9:30 a.m. Presentation and welcome.
Albert Regatero, president of the Asociación Síndrome STXBP1

9:40 a.m. Family history.
Olga Cuadrado, vice-president of the Asociación Síndrome STXBP1

9:50 a.m. STXBP1 Syndrome: Clinical experience at Vall d’Hebrón Hospital.
Dr. Anna Baró. Pediatric Neurology Section Vall d’Hebron Barcelona Hospital Campus and Unit of Pediatric Neurology Granollers General Hospital.

10:10 a.m. Electroencephalographic characteristics of STXBP1 encephalopathy.
Dr. Lena Verdaguer. Clinical Neurophysiology Service, Vall d’Hebrón Barcelona Hospital Campus.

10:30 am Genetic and functional analysis in epileptic and developmental encephalopathies.
Dr. Alfons Macaya. Pediatric Neurology Section Vall d’Hebrón Barcelona Hospital and Vall d’Hebrón Research Institute.

11:00 am  Simons Searchlight, Registry & Research possibilities share latest numbers / trends
Misia Kowanda, investigator, Simons Foundation.

11:25 a.m. Coffee break

11:45 a.m. A look at neurodevelopmental and movement disorders from Sensory Integration.
Bárbara Viader, Director and TO of the Comprehensive Stimulation Center of Barcelona (CEIB)

12:45 a.m. STXBP1-associated encephalopathy: importance of phenotyping, networking and synchronization
Dr. Alejandra Darling and Dr. Mar O’Callaghan. Neuropediatricians of the Neurology Service of the Hospital Sant Joan de Déu Barcelona

1:45 p.m. Break

2:30 p.m. Family history
Ricardo Murillo, Board of the Asociación Síndrome STXBP1

2:45 p.m. Research and Scientific Advances in STXBP1 Syndrome.
Pfr. Dr. Francisco J. Esteban. Systems Biomedicine Group. University of Jaen (UJA)

3:45 p.m. Multisensory stimulation at home.
Alba Alier, Special Education Teacher and speech therapist. QUINERA – BJ ADAPTATIONS

Day 2 – Saturday June 4

9:00 a.m. Presentation Day 2
Albert Regatero, president of the STXBP1 Syndrome Association

9:15 a.m. Family history

9:30 a.m. Cell Therapy Project for STXBP1 Syndrome. Results Phase 3
Dr. Manuel Álvarez Dolado. Andalusian Center for Molecular Biology & Regenerative Medicine (CABIMER)

10:30 am Phenotype/Genotype Relationship in STXBP1 Syndrome. From mutation to clinic.
Pfr. Dr. Francisco J. Esteban. Systems Biomedicine Group. University of Jaen (UJA)

11:15 a.m. Coffee Break

11:30 a.m. Precision medicine in Dravet and other epileptic and developmental encephalopathies.
Dr. Susana Boronat. Director of Pediatrics. FGS Hospital of Santa Creu i Sant Pau (Barcelona).

12:15 pm New challenges of the STXBP1 Italy Patient Association. Activities and Research.
Attilio Azzola, member of STXBP1 Italy

12:30 p.m. Clinical Case: Therapeutic Approach from Sensory Integration
Irene Sanchez. Coordinator and Occupational Therapist Center for Comprehensive Stimulation of Barcelona (CEIB)

1:30 p.m. Importance of associative movement STXBP1. A look around the world.
Albert Regatero, president of the STXBP1 Syndrome Association

1:45 p.m. Break

3:00 p.m. General Assembly of Members of the Asociación Síndrome STXBP1
/ Restricted access to members and guests /

Free registration here (limited capacity).

The presentation in English will have simultaneous translation into Spanish for those who want it and the rest of the Congress will have simultaneous translation into English.

Babysitting service will be available for minor companions, if this is the case, please indicate it on the registration form.

We hope to see you very soon.

Greetings,

STXBP1 Syndrome Association Board of Directors