Patiëntenvereniging Aangeboren Hartafwijkingen (PAH)
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
- VSD/ASD/AVSD
- 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
Other
- 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
www.aangeborenhartafwijking.nl
Contact
info@aangeborenhartafwijking.nl