Herzkinder Fulda / Bundesverband Herzkranker Kinder e.V. (BVHK)

Representative: Carola Ossenkopp

Familial Electrical Diseases

  • Long QT syndrome
  • Brugada syndrome
  • Catecholaminergic polymorphic ventricular tachycardia

Familial Cardiomyopathies

  • Arrhythmogenic cardiomyopathy
  • Dilated cardiomyopathy
  • Hypertrophic cardiomyopathy
  • Restrictive cardiomyopathy
  • Non-compaction cardiomyopathy

Congenital Heart Diseases

  • tricuspid atresia
  • pulmonary stenosis
  • aortic and mitral valves
  • pulmonary and tricuspidal valves
  • cardiac septa
  • cardiac chambers and connections
  • VSD
  • Fallot
  • univentricular heart
  • others

Other Rare Cardiac Diseases

  • Myocarditis


Aims of the Organization

The BVHK was founded in 1993 and is Germany’s largest association with over 30 self-help groups and a total of around 3000 affected members. The BVHK supports families of children and adults with congenital heart defects. The board of directors consists of parents of affected children. There is also a scientific advisory board made up of scientists from the fields of pediatric cardiology, pediatric cardiac surgery, psychology and health policy. The BVHK is an accredited patient representative in the bodies of the Federal Joint Committee (G-BA), an active member of the guidelines commission of the German Society for Pediatric Cardiology, the Competence Network for Congenital Heart Defects and National Registers for Congenital Heart Defects. Working groups in different areas seek to improve the situation of people with congenital heart disease in Germany. Working groups exist in the areas of: family-oriented rehabilitation, adults with congenital heart defects, task force “Staff shortage in children’s intensive care units”, school/occupation and heart sports

Activities of the Organization

The BVHK offers the following services for members and non-members:

  • Information, brochures, magazines
  • peer-to-peer support, holiday offers for affected children, swimming weekends
  • Legal advice and social law hotline, parent coaching

More information Herzkinder Fulda https://www.herzkinder-fulda.de/
Bundesverband Herzkranker Kinder e.V.  www.bvhk.de

Contact: herzkinder-fulda@gmx.de