Burgos Meeting May 2011
EURO HSP held its First European Conference on HSP in the Spanish Center of Reference for Rare Diseases (CREER) in Burgos, Spain, on 28th and 29th May 2011.
Miguel Ángel Ruiz (Director of the CREER), Juan Carlos Aparicio (Mayor of Burgos), Fernando González (president of EURO HSP) and Francisco Rodriguez (president of AEPEF).
The conference was inaugurated by the Mayor of Burgos, Juan Carlos Aparicio.
As Eurordis representative, Ute Wallentin, OIFE president, opened the conference speaking about the:
The speakers were:
Chantal ME Tallaksen
PhD Professor in neurology Department of neurology, Oslo University Hospital and Faculty of medicine, Oslo University.
- Clinical highlights and diagnosis in HSP. (PPT-file 6,8 mb - slides 1-47)
- Genetic Diagnosis in HSP, from the clinicians point of view. (PPT-file 6,8 mb - slides 48-94)
Dr. Dominique Mazevet
MD Physical Medicine & Rehabilitation Dpt, Salpétrière University Hospital, Paris France.
- Spasticity: Clinical aspects and management.
MD, Physical Medicine & Rehabilitation Dpt, IRCCS E. MEDEA-La Nostra Famiglia-Bosisio Parini-Italy.
- Pharmacological and surgical procedures for the treatment of spasticity. (PPTX-file 1,13 mb)
MD, Barbeito Centro Médico de Rehabilitación Monte Alto Madrid, Spain.
- Rehabilitation and Medical acupuncture: pain, spasticity and balance.
Christina María Cop
Physiotherapist Centro Médico de Rehabilitación Monte Alto Madrid, Spain.
- Physical therapy in HSP, Aplying Bobath concept and Perfetti.
Dr. Andrea Borney
- Adapted sports for HSP individuals (Italian).
Speech Therapist Denmark.
- Speech disorders and treatment. (PPT-file, 1,5 mb)
MD, PhD, Department of Neurology, Hospital S. Sebastião, Santa Maria da Feira, Portugal.
- Recessive spastic paraplegias: less well-known, more severe, in need of special attention. (PPT-file 1,4 mb)
Maria Jesús Sobrido
MD, Fundación Publica Galega de Medicina Xenomica, España
- Genetics and HSP.
A round table moderated by Rob Camp (EURORDIS) and Ute Wallentin, OIFE President, Germany, (EURORDIS) about Psychological issues and stress was maintained. The participants were:
Begoña Ruiz García
Psychologist, Specialist in Clinical Psychology, Chief of Training and Coordination at CREER.
- Manejo del estrés en el proceso de adaptación a la enfermedad. (PPT-file 3,2 mb)
Montserrat Fernández Prieto
Doctor of Psychology and Senior Researcher of the Galician Public Foundation for Medical Genomics-SERGAS
- Factores emocionales y cognitivos de la comunicación familiar en enfermedades neurogenéticas"
Antonella Delle Fave
MD, Professor of Psychology, Department of Clinical Science Luigi Sacco, University of Milan, Faculty of Medicine, Milan-Italy.
Raffaela D.G. Sartori
Ph.D. student, Department of Clinical Science Luigi Sacco, University of Milan, Faculty of Medicine, Milan-Italy.
- HSP and Quality of life: the perspective of patients and their caregivers. (PPT-file, 233 kb)
On May 30th 2011 EURO HSP celebrated held its first General Assembly.