Phelan-McDermid Syndrome International Conference – Europe

21-23 September 2018

Madrid, Spain

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The University Hospital La Paz, in Madrid, Spain, will host the Phelan-McDermid Syndrome International Conference‚ Europe on 21-23 September 2018, organized by the Spanish Phelan-McDermid Syndrome Association.

The aim of the conference is to present the latest advances in research on Phelan-McDermid syndrome. It will be an opportunity to exchange opinions and learn first-hand about the problems and constraints faced by those affected and their families.

The conference is aimed at families and PMS associations in Europe and other countries and is open to scientists, health professionals and anyone interested in learning and updating their knowledge about the syndrome.

  • Scientific Conference: the first day is aimed at the scientific and medical community, health professionals and the pharmaceutical industry; as a forum for discussion, updating and dissemination of the latest progress in research and knowledge about Phelan-McDermid syndrome. In addition, we want to give voice to all those national and foreign students and researchers who are working on Phelan-McDermid syndrome or the SHANK3 gene. For this, there will be a space for the presentation of posters during the conference.
  • Medical Conferences: the second and third days are focused on family members, associations, therapists and all people interested in the syndrome; as a meeting point and update of the most important issues that affect the daily life of patients affected with PMS and other related disorders.

We believe it is extremely important to take advantage of this meeting to create a climate of collaboration among research teams, to make progress in improving the quality of life of those affected and their families.

On this website you can find the program, the registration form, and information regarding accommodation, transportation and other logistical details.

Scientific Committee and Organizers
Dr. Catalina Betancur
INSERM, CNRS, Sorbonne Université, Paris
Dr. Pablo Lapunzina
INGEMM, Hospital Universitario La Paz, IdiPAZ, CIBERER, CIBER of Rare Diseases, Madrid
Dr. Julián Nevado
INGEMM, Hospital Universitario La Paz, Madrid
Norma Alhambra
President, Spanish Phelan-McDermid Syndrome Association
Coordination and Sponsorships
Ángeles Delgado
686 222 978
Óscar Lorenzo
615 102 537
Contact for Media
Juan Ramón Rodríguez
686 465 613
technical bureau
Mª José Valero
634 57 53 63

CONFERENCE PROGRAM

SCHEDULE

  • September 21: From 09:30 to 17:30: Scientific Conferences (with coffee breaks and lunch included).
  • September 21: From 17:30 to 19:00: Exhibition of Scientific Posters (with beer and Spanish tapas included). Click here to know the criteria for participation.
  • September 22: From 09:30 to 18:30: Medical Conferences (with coffee breaks and lunch included).
  • September 23: From 10:00 to 14:00: Medical Conferences (with coffee breaks and lunch included).

 

* During the medical conferences, families who wish to do so may consult with specialists about their doubts about the interpretation and meaning of their genetic reports, in a simple and accessible way, booking their appointment in advance at conferencia@22q13.org.es

* Simultaneous translation between English and Spanish will be available during the conference. Translations into other languages could be made available if enough participants from a given country are attending.
* You can see and download the full conference program in PDF.

CONFERENCE PROGRAM

SPEAKERS

Norma Alhambra
President, Spanish Phelan-McDermid Syndrome Association, Madrid

Guillermo Álvarez Calatayud, MD, PhD
Pediatric Gastroenterology and Nutrition Section of the Gregorio Marañón University General Hospital, Madrid

Catalina Betancur, MD, PhD
Director of Research INSERM (French National Institute of Health and Medical Research), Sorbonne Université, Paris

Joseph Buxbaum, PhD
Professor, Departments of Psychiatry, Neuroscience Genetics and Genomic Sciences Director, Seaver Autism Center for Research and Treatment, Icahn School of Medicine at Mount Sinai, New York

Jos I. M. Egger, PhD
Professor of Contextual Psychology Radboud University, Donders Institute for Brain, Cognition and Behaviour Scientific Director, Vincent van Gogh Institute for Psychiatry, Venray, The Netherlands

David Fraguas, MD
Department of Child and Adolescent Psychiatry, Gregorio Marañón University Hospital, Madrid

Antonio Gil-Nagel, MD
Epilepsy Program Director, Department of Neurology, Ruber International Hospital, Madrid

Alex Kolevzon, MD
Professor, Departments of Psychiatry and Pediatrics Clinical Director, Seaver Autism Center for Research and Treatment, Icahn School of Medicine at Mount Sinai, New York

Pablo Lapunzina, MD, PhD
Institute of Medical and Molecular Genetics (INGEMM), La Paz University Hospital, Madrid

Sue Lomas
President, Phelan-McDermid Syndrome Foundation, Sarasota, Florida

Juan Carlos López Gutiérrez, MD, PhD
Head of the Division of Pediatric Reconstructive Surgery and Director of the Vascular Anomalies Center at La Paz University Hospital, Associate Professor of Pediatrics at University of Madrid, Madrid

Eva Loth Sackler, PhD
Senior Lecturer, Sackler Institute for Translational Neurodevelopment, Department of Forensic and Neurodevelopmental Science, King’s College London, London

Lluís Montoliu, PhD
CSIC Research Scientist, National Centre for Biotechnology (CNB-CSIC) and CIBERER-ISCIII, Madrid

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Julián Nevado, PhD
Institute of Medical and Molecular Genetics (INGEMM), La Paz University Hospital, Madrid

Mara Parellada, MD, PhD
AMI-TEA Program Director (Integral Care of patients with ASD), Department of Child and Adolescent Psychiatry, Gregorio Marañón University Hospital, Madrid

Katy Phelan, PhD
Director of Cytogenetics, Florida Cancer Specialists & Research Institute, Fort Myers, Florida

Rafael del Río, MD
Neurophysiology and Sleep disorders Unit, Head of the Clinical Neurophysiology Service, Vithas Hospital, Madrid

Willem M. A. Verhoeven, MD, PhD
Former head of the Centre of Excellence for Neuropsychiatry, Vincent van Gogh Institute for Psychiatry, Venray. Emeritus Professor, Department of Psychiatry, Erasmus University Hospital, Rotterdam, The Netherlands

SOCIAL PROGRAM

  • 09:00 Meeting point for affected individuals and siblings* at the entrance hall of the General Hospital, La Paz University Hospital.
  • 09:30 – 18:30 Day of recreational activities at Fundaland* for affected individuals and siblings, Shuttle bus round trip, accompanying monitors, lunch and snack included. Cost included in Registration Fee.
  • 18:30 – 19:00 Pick up of affected individuals and siblings at the entrance hall of the La Paz University Hospital.

*  Note: Includes supervised return bus travel for children aged three and above. Children below the age of three must be accompanied by an adult.

Fundaland, A La Par Foundation.

  • 09:00 Meeting point for affected individuals and siblings at the entrance hall of the General Hospital, La Paz University Hospital.
  • 09:30 – 18:30 Day of recreational activities at La Paz University Hospital for affected individuals and siblings. Monitors and lunch included. Cost included in Registration Fee.
  • 09:30 – 18:30 Fun Day for siblings and adults at Madrid Warner Bros theme park. Optional. Price includes entrance ticket, return bus transport, accompanying monitors and standard lunch menu.
    • Price per person Adults (+ 140 cm height) = 55€
    • Price per person Junior (from 100 cm to 140 cm height) = 53€
    • Price per person Senior (+ 60 years) = 48€
    • Price per child from 0 to 2 years (-100 cm height, with bus and food with menu) =30€
    • Price per child from 0 to 2 years (-100 cm height, only bus and without food) = 19€
  • 18:30 – 19:00 Pick up of affected individuals and siblings at the entrance hall of the La Paz University Hospital.
  • 20:30 Solidarity dinner for PMS families: dinner type cocktail, music, dance, performances, raffle and charity auction at Hotel Weare Chamartin.
    • Adult Cocktail (+13 years) = 42€ (Including 5€ donation for research on Phelan-McDermid Syndrome)
    • Children’s Menu (from 3 to 12 years old) = 20€
  • 09:00 Meeting point for affected individuals and siblings at the entrance hall of the General Hospital, La Paz University Hospital.
  • 09:30 – 14:00 Day of recreational activities at La Paz University Hospital for affected individuals and siblings. Monitors, meal and snack included. Cost included in Registration Fee
  • 17:00 – 20:00 Guided tour of Madrid by bus. Optional. 23.50 € per person. (Children up to 3 years free, as long as the occupation of the bus allows it.)
REGISTRATION
YOU CAN ALREADY REGISTER FOR THE CONFERENCE BY CLICKING HERE
SPECIAL FOR UNIVERSITY STUDENTS
LOCATION AND ACCOMMODATION
Location

DATES: 21-23 September 2018

LOCATION: Sessions will be held at the Profesor Ortiz-Vázquez auditorium, General Hospital Building, La Paz University Hospital. La Paz University Hospital is located in the northern part of the city and has easy access by bus, underground (Line 10‚ Begoña Station) or taxi.
La Paz University Hospital

Hospital Universitario La Paz

Sal??n de Actos del Hospital General – Aula Profesor Ortiz V?°zquez

Paseo de la Castellana 261, 28046 Madrid

Hospital Universitario La Paz

Sal??n de Actos del Hospital General – Aula Profesor Ortiz V?°zquez

Paseo de la Castellana, 261. 28046, Madrid

Location

ACCOMMODATION: In collaboration with the travel agency Travelfast, specialized in inclusive tourism, an accommodation offer has been prepared with special prices for conference attendees (limited places). The Hotel Weare Chamartín is located in the train station itself and very close to public transport stops (bus or underground) that will allow easy access to the conference venue. In addition, the Solidarity Dinner will be held on Saturday 22nd in the same place.

RESERVATIONS: The agreed prices are only valid for bookings made before June 30th through the agency Travelfast reservas1@travelfast.es and telephone 916 55 52 69 (ext.1). Write an email or call to book your trip by train or plane with discounts and the accommodation you need.

  • PRICE PER PERSON AND NIGHT IN TRIPLE / QUADRUPLE   49 €
  • PRICE PER PERSON AND NIGHT IN DOUBLE                            55 €
  • INDIVIDUAL SUPPLEMENT                                                            48 €
  • PRICE WITH VAT                                                                              INCLUDED
  • BUFFET BREAKFAST                                                                       INCLUDED

Hotel Weare Chamartín, Madrid

Hotel Weare Chamartín

Calle de Agustín de Foxá, 28036 Madrid
Tel: +34 91 334 49 00

Hotel Weare Chamartín, Madrid

Hotel Weare Chamartín

Calle de Agustín de Foxá, 28036 Madrid
Tel: +34 91 334 49 00

Hotel Weare Chamartín, Madrid

Hotel Weare Chamartín

Calle de Agustín de Foxá, 28036 Madrid
Tel: +34 91 334 49 00

DO YOU WANT TO COLLABORATE?

If you want to collaborate in the organization of the Conference there is the possibility of sponsorships and collaborations to cover the costs that an event of these characteristics entails. If you are interested, you can get in touch with: Ángeles Delgado or Óscar Lorenzo.

Ángeles Delgado
686 222 978
Óscar Lorenzo
615 102 537
COLLABORATORS
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