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Home - Network - Working Groups - Rare Disease Working Groups - Marfan, Loeys-Dietz syndr…(HTAD-WG) - Sub Working Groups - Pediatrics
Marfan, Loeys-Dietz syndr…(HTAD-WG)
Introduction
Disease Information
Overview Genetic Testing for Hereditary Thoracic Aortic Aneurysm Disease Familial Thoracic Aortic Aneurysm and Dissection (Familial TAAD) Marfan Syndrome
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Sub Working Groups
Aortic Imaging Gene Compendium Pediatrics Variants

Pediatrics

The Pediatric Sub-Working Group is dedicated to advancing the understanding and care of patients with Heritable Thoracic Aortic Diseases during childhood and adolescence. This group is comprised of cardiologists, pediatric cardiologists, geneticist and ePAG representatives committed to enhance care and quality of life of young patients. Through collaborative efforts, the Pediatric Sub-Working Group develops various valuable resources tailored for children and adolescents, aiding them in understanding their medical condition. Moreover, the group is focused on crafting specific recommendations for medical professionals, thereby contributing significantly to the progress of knowledge and patient care in this domain. The members of the pediatric sub-working group are outlined below:

 

  • Prof. Laura MUIÑO MOSQUERA, Pediatric Cardiologist and Cardiogeneticist, Belgium
  • Prof. Anna SABATE ROTES, Pediatric Cardiologist, Spain
  • Prof. Katya DE GROOTE, Pediatric Cardiologist, Belgium
  • Dr. Wendy DEWALS, Pediatric Cardiologist, Belgium
  • Dr. Annelies E. VAN DER HULST, Pediatric Cardiologist, The Netherlands
  • Dr. Elena CERVI, Cardiologist, United Kingdom
  • Dr. Sujeev MATHUR, Pediatric Cardiologist, United Kingdom
  • Dr. Michal ODERMARSKY, Pediatric Cardiologist, Sweden
  • Dr. Kalliopi KAZAMIA, Pediatric Cardiologist, Sweden
  • Dr. Dorte Guilbrand NIELSEN, Cardiologist, Denmark
  • Prof. Thomas MIR, Pediatric Cardiologist, Germany
  • Dr. Olivier MILLERON, Cardiologist, France
  • Dr. Irène VALENZUELA, Pediatrician and Clinical Geneticist, Spain
  • Dr. Zina FEJZIC, Pediatric Cardiologist, The Netherlands
  • Prof. Guillaume JONDEAU, Cardiologist, France
  • Françoise STEINBACH, ePAG representative, France
Results (3)
Management of aortic disease in children with FBN1-related Marfan syndrome
September 09 2024

A joint statement from the paediatric subgroup of the European Reference Network of Vascular Diseases (VASCERN, Heritable Thoracic Aortic Disease working group) and the Association for European Paediatric and Congenital Cardiology (AEPC).

Muiño-Mosquera L, Cervi E, De Groote K, Dewals W, Fejzic Z, Kazamia K, Mathur S, Milleron O, Mir TS, Nielsen DG, Odermarsky M, Sabate-Rotes A, van der Hulst A, Valenzuela I, Jondeau G. Management of aortic disease in children with FBN1-related Marfan syndrome. Eur Heart J. 2024 Sep 9:ehae526. doi: 10.1093/eurheartj/ehae526. Epub ahead of print. PMID: 39250726.

Bakoumba (EN)
May 04 2023

This book is dedicated to children with Marfan syndrome and to all children who are different.

Bakoumba 1
Bakoumba (FR)
March 20 2023

Bakoumba, un ouvrage dédié aux enfants atteints du syndrome de Marfan et à tous les enfants différents. Pour le consulter, contactez l’association Marfans via le lien ci-dessous qui vous donnera le code d’accès.

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