Patiëntenvereniging Aangeboren Hartafwijkingen (PAH)

Representative: Judith van de Meerakker

Dutch Patient Association for Congenital Heart Diseases

Disease(s) Covered

Familial Electrical Diseases

  • Long QT syndrome
  • Idiopathic ventricular fibrillation

Familial Cardiomyopathies

  • Hypertrophic cardiomyopathy

Congenital Heart Diseases

  • tricuspid atresia
  • pulmonary stenosis
  • pulmonary atresia
  • aortic and mitral valves
  • Tetralogy of Fallot
  • Double outlet right ventricle
  • Transposition of the great arteries (TGA)
  • Hypoplastic left/right heart syndrome
  • Ebstein anomaly
  • univentricular heart
  • others

Other Rare Cardiac Diseases

  • Marfan syndrome
  • Wolff Parkinson White syndrome
  • Endocarditis
  • other rare cardiac diseases


  • Sudden cardiac death
  • Grief support
  • Daily life

Aims of the Organization

The PAH is for everyone who is dealing with a congenital heart defect. From parents who have just been diagnosed during the 20-weeks echo to adults who have been dealing with a congenital heart disease all their lives. Each phase of life has it own questions, uncertainties, challenges and solutions.

Our aim is that people with a congenital heart defect can participate in society as best as possible.

Activities of the Organization

  • Organise and facilitate activities where people meet fellow patients.
    For example we organise contact days with specific themes.
    Sharing experiences, recognition and understanding are important elements during these activities.
  • Education and information
    We provide information about the various heart defects, treatments and daily life. On the website and in our members magazine „Sinus“ we share a lot of experience stories.
  • Advocacy
    We help our members to take control of their own care and to achieve optimal resultsto participate in society. We give support, among other things, in the areas of:work, care support, insurance, transport, school/study and benefits. Wework closely with the (children’s) heart centers, sister organizations and other healthcare providers to optimize care.

More information