10th WORLD CONFERENCE CORNELIA DE LANGE SYNDROME 2019

2 days for families, 1 day a symposium for caregivers, teachers, doctors and researchers

Dorint Parkhotel Bad Neuenahr
31 julio - 03 agosto 2019

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160 Dias
07 Horas
21 Minutos
04 Segundos
 

lugar

Dorint Parkhotel Bad Neuenahr

 

Dia y hora

31 julio - 03 agosto 2019

Together

Together with experts and families we search, find and share with the purpose to learn, cry and celebrate.Together we experience friendship, security and openness

Juntos

10° Conferencia Mundial Síndrome Cornelia de Lange – 2019

Juntos, expertos y familias buscan respuestas, encuentran soluciones y comparten las mejores prácticas. Nuestra comprensión de CdLS se incrementa y las familias están en mejores condiciones para enfrentar los desafíos de criar a sus hijos. Fortalecemos la amistad, en un ambiente emocionalmente seguro. Los padres son apoyados y animados a compartir preocupaciones y celebrar triunfos.

Conferencia Familiar

 Hay un programa completo de conferencias los días viernes y sábado donde las familias pueden conocer los últimos desarrollos y estrategias para trabajar con personas afectadas por CdLS e informarse sobre los tratamientos y riesgos de salud mucho antes...

 de que la información se publique. Los profesionales estarán disponibles para realizar consultas privadas individuales con las familias para ayudar a evaluar los problemas que afectan a la persona con CdLS.
El evento puede comenzar con una reunión de los diferentes países dirigidos por sus directores profesionales nacionales y proporcionarán un resumen de la reunión del SAC en su propio idioma.

Las familias de habla hispana deben tener en cuenta que, las sesiones principales serán traducidas en simultáneo al español si existen 20 o más asistentes. Estamos buscando traductores voluntarios para ayudar en las consultas médicas.
Planeamos una serie de viajes para los hermanos y jóvenes que asistan a la conferencia y, por las noches hay mucha diversión para toda la familia en nuestros eventos sociales planificados.

Simposio Científico

 El jueves habrá una conferencia de día completo donde se analizarán los desafíos que enfrentan los profesionales que trabajan con alguien afectado por CdLS, donde los problemas como el autismo se complican con problemas médicos. Esperamos que al abordar...

 algunos de estos temas y al considerar un enfoque holístico para el tratamiento y la gestión de las personas afectadas, podremos desarrollar un modelo de atención que pueda compartirse internacionalmente. Esto ayudará a las personas en el futuro.

El lugar de la conferencia...

 Bad Neuenahr-Ahrweiler
Frecuentemente las personas viajan durante el verano a Bad Neuenahr-Ahrweiler para aprovechar todo lo que esta región tiene para ofrecer. Los Spa para quienes quieren mejorar su salud, los excelentes restaurantes y vinos para los amantes de lo...

 gourmet y la buena vida, las actividades deportivas que Waldkletterpark, Rotweinwanderweg, Ahrsteig y Nordic Fitness Park tienen para ofrecer a sus huéspedes más activos y, para los fanáticos de la cultura pueden expandir sus conocimientos en la villa romana, dentro de la muralla de la ciudad de Ahrweiler. Además, existen numerosos parques, senderos para realizar caminatas o tomar un café en sus callecitas, el ambiente vacacional está en todas partes.
En el medio del valle de Ahr, entre bosques y viñedos, se encuentra la ciudad de Bad Neuenahr Ahrweiler, capital del distrito de Bad Neuenahr, aquí la diversidad cultural es particularmente evidente en las estructuras arquitectónicas, en las que se refleja la influencia romana, que existió en el pasado, son ejemplo de ello los edificios, las puertas y murallas de la ciudad. El distrito de Bad Neuenahr, por su parte, es testigo de la glamorosa época imperial, cuya influencia aún es reconocible hoy en día en los diversos edificios y calles que no han perdido la elegancia de esas épocas.
Entretenimiento variado, estándares de calidad de última generación, edificios históricos en medio del pintoresco paisaje del Valle de Ahr, esto es Bad Neuenahr-Ahrweiler.

  

Conozca a nuestros disertantes

Hacemos nuestro mejor esfuerzo para invitar a personas de todo el mundo que puedan brindarle la ayuda que espera. Tanto profesores, maestros, padres o hermanos con experiencia discutirán los temas para la mejor calidad de vida posible. Nuestro lema; ¡JUNTOS!

Frank Kaiser

Frank Kaiser

Since 2013, he has been Professor of Functional Genetics and Human Genetics at the Institute of Human Genetics at the University of Lübeck. In addition to genetic and functional analyzes in the field of cohesinopathies (like Cornelia de Lange syndrome), the research of his research group focuses on molecular mechanisms in the area of genetic disorders and hereditary diseases

He studied biology at the Ruhr-University Bochum. In his doctorate and postdoctoral studies at the Institute of Human Genetics in Essen, he performed functional analysis of the transcription factor TRPS1. 

member of the scientific advisory council of the CdLS World Federation.

David Fitzpatrick

David Fitzpatrick

is a professor and has been a consultant in paediatric genetics in Edinburgh since 1994. His clinical interests are in paediatric neurodevelopmental disorders and in the identification of genetic causes of serious developmental disorders.

He studied medicine at University of Edinburgh and then trained in paediatrics in Edinburgh, Bristol and Glasgow. He trained in clinical genetics in Glasgow as a Wellcome Trust Clinical Research Fellow and in Johns Hopkins Hospital in Baltimore on a Howard Hughes Medical Institute Clinical Research Fellowship. 

member of the scientific advisory council of the CdLS World Federation.

Matt Deardorff

Matt Deardorff

did his PhD in Cell and Molecular Biology and is an attending physician and Associate Medical Director of the Roberts Individualized Medical Genetics Center at Children's Hospital of Philadelphia. 

He did his medical specialist training in Pediatrics at Children's Hospital of Philadelphia, followed by a fellowship in genetics at Children's Hospital of Philadelphia & University of Pennsylvania. 

member of the scientific advisory council of the CdLS World Federation. 

Angelo Selicorni

Angelo Selicorni

has been involved in the diagnosis and in the medical follow-up of patients with genetic syndromes like Cornelia de Lange syndrome since 1990. He is working at Telethon and wrote many articles and other publications on CdLS and other genetic syndromes and is pediatric expert on gastro-oesofageal reflux disease in CdLS

He is a pediatrician and medical geneticist working in a pediatric department at ASST Lariana, Como, Italy. 

medical director of the Italian CdLS support group, the past president and still board member of the Scientific Advisory Council of the CdLS World Federation. 

Antonie Kline

Antonie Kline

areas of expertise include evaluation of multiple birth defects and/or developmental issues, and interpretation of clinical testing results

She received her medical degree and postdoctoral training in medical genetics from Jefferson Medical College, Philadelphia, Pa., and clinical cytogenetics and molecular training at the Johns Hopkins University School of Medicine, Baltimore, Md. 

She is also a Fellow of the American Academy of Pediatrics and a Founding Fellow of the American College of Medical Genetics. 

medical director of the Cornelia de Lange Syndrome Foundation USA and board member of the scientific advisory council of the CdLS World Federation. 

Sylvia huisman

Sylvia huisman

is a clinical supervisor of the specialist training program at Prinsenstichting and a teacher at the Erasmus University Medical Center, Rotterdam. She did a PhD on Self-injurious Behaviour in Cornelia de Lange syndrome

She works at Prinsenstichting, at the Amsterdam Expertise Center for Neurodevelopmental Disorders (including Cornelia de Lange syndrome) at the Amsterdam University Medical Center, and at the Centre for Consultancy and Expertise (CCE). 

She is a Physician for Individuals with Intellectual Disabilities (AVG). She received her specialist training at the Prinsenstichting and at the Erasmus University Medical Center, Rotterdam. 

medical director of the Dutch CdLS group and president of the scientific advisory council of the International CdLS Federation.

Chris Oliver

Chris Oliver

is currently researching early intervention, behaviour disorders in people with severe intellectual disability and autism spectrum disorder, behavioural phenotypes in genetic syndromes and neuropsychological and behavioural assessment for people with severe intellectual disability. 

He is Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.

He was trained as a clinical psychologist at Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual disability at the Institute of Psychiatry, London. 

Editor in Chief for the Journal of Intellectual Disability Research. He is a member of the scientific advisory council of the CdLS World Federation.

Paul Mulder

Paul Mulder

specializes in assessment of children and adults with severe and complex autism spectrum disorders, especially supportive communication, social-emotional functioning, sensory information processing and cognitive development in children and adolescents with autism spectrum disorders

He is behavioral specialist at Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute in Groningen. 

He did his PhD on "Cognition, self-injury and autism in Cornelia de Lange Syndrome: their mutual relationships and genetic background.” 

He is behavioral advisor of the Dutch CdLS group and board member of the scientific advisory council of the CdLS World Federation.

Inge van Balkom

Inge van Balkom

was trained as a psychiatrist in Amsterdam and continued her training as a child and adolescent psychiatrist, including a residency in Clinical Genetics. 

She received her medical degree at Groningen University.

From 2006 to date Inge is employed as medical director at Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute in Groningen. 

She is a member of the Global Partnerships in the Epidemiology of Developmental Disabilities, and of the CDC-National Center on Birth Defects and Developmental Disabilities, Atlanta, USA. 

She is a member of the scientific advisory council of the CdLS World Federation.

 

News about 2019 Cornelia de Lange conference

The 2019 Worldconference will be a great experience for everybody involved with Cornelia de Lange syndrome

Eche un vistazo a nuestros paquetes de conferencias

We try to make the conference attractive for as many people as possible; Families with children, Parents or Siblings coming alone, volunteers, experts looking for information, speakers and/or workshop leaders, leaders from other CdLS groups,...

 

With your entire family to the family conference - August 2 - 3, 2019

  • participar en la conferencia
  • fiesta de gala
  • actividades para hermanos (10-18 años)
  • tenga una consulta individual (1:1)
 

Special package for Students

  • participar en la conferencia
  • fiesta de gala
  • tenga una consulta individual (1:1)
 

Professionals - Symposium on August 1st, 2019

  • simposio para profesionales

Juntos es posible

Estamos muy contentos y orgullosos de haber podido reunir a un grupo de organizaciones que harán posible esta conferencia.

Mantente en contacto

¿Te gustaría saber más, tienes una pregunta? Haremos nuestro mejor esfuerzo para responderle lo antes posible. Ayudenos si crees que olvidamos algo ...

Información de contacto

Arbeitskreis Cornelia de Lange E.V.
Germany
info@corneliadelange.de
Vereniging Cornelia de Lange syndroom
Netherlands
vereniging@cdlsworld.org

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