Herzkind e.V.
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Description of patient organisation
Der Herzkind e.V. ist eine gemeinnützige Selbsthilfeorganisation und widmet sich der Verbesserung der Betreuung und Beratung herzkranker Kinder, Jugendlicher und junger Erwachsener sowie ihrer Familien. Der Verein wurde 1984 gegründet und umfasst heute 32 regionale Kontaktgruppen, in denen sich Eltern und Angehörige herzkranker Kinder zusammengeschlossen haben. Für ratsuchende Eltern stehen bundesweit 75 Herzkind-Familien als Ansprechpartner/innen zur Verfügung.
Eltern helfen Eltern: zuhören, verstehen, begleiten, trösten, aber auch praktische Hilfen im Umgang mit der Krankheit und im Umgang mit Kliniken und Ärzten, Krankenkassen, Ämtern und Behörden, Kindergarten und Schule – das bietet der Herzkind e.V. Durch die Zusammenarbeit mit weiteren Vereinen und Organisationen soll eine flächendeckende Unterstützung für die Patientengruppe "Kinder und Jugendliche mit angeborenen Herzfehlern" geschaffen werden.
Eltern helfen Eltern: zuhören, verstehen, begleiten, trösten, aber auch praktische Hilfen im Umgang mit der Krankheit und im Umgang mit Kliniken und Ärzten, Krankenkassen, Ämtern und Behörden, Kindergarten und Schule – das bietet der Herzkind e.V. Durch die Zusammenarbeit mit weiteren Vereinen und Organisationen soll eine flächendeckende Unterstützung für die Patientengruppe "Kinder und Jugendliche mit angeborenen Herzfehlern" geschaffen werden.
Care provisions
This support group organisation offers the following
- Social / legal advice
- Regular meetings
- Regional associations / regional representatives
- Newsletter / Association journal
Special offers
Sozialrechtliche Beratungsstelle für Menschen mit angeborenem Herzfehler (ein gemeinsames Angebot des Herzkind e.V. und der Deutschen Herzstiftung).Preview of the represented diseases 2
Cardiofaciocutaneous syndrome
Pulmonary valve agenesis-intact ventricular septum-persistent ductus arteriosus syndrome
Familial dilated cardiomyopathy
Andersen-Tawil syndrome
Mitral atresia
Inherited isolated arrhythmogenic cardiomyopathy, dominant-left variant
Inherited isolated arrhythmogenic cardiomyopathy
Sensorineural deafness with dilated cardiomyopathy
Pulmonary atresia with ventricular septal defect
Premature closure of the arterial duct
Transposition of the great arteries
Cardiac diverticulum
Tricuspid valve agenesis
Rare cardiac disease
Congenital pulmonary veins atresia or stenosis
Rare surgical cardiac disease
Timothy syndrome
Tricuspid valve prolapse
Congenitally corrected transposition of the great arteries
Restrictive cardiomyopathy
Congenital pulmonary venous return anomaly
HEC syndrome
Congenital aortic valve stenosis
Congenitally uncorrected transposition of the great arteries
Syndrome associated with dilated cardiomyopathy
Hypertrophic cardiomyopathy due to intensive athletic training
Cervical aortic arch
Dilated cardiomyopathy
Kidney tubulopathy-dilated cardiomyopathy syndrome
Mitochondrial disease with dilated cardiomyopathy
Inherited isolated arrhythmogenic ventricular dysplasia, biventricular variant
Inherited isolated arrhythmogenic cardiomyopathy, dominant-right variant
Congenital systemic veins anomaly
Fixed subaortic stenosis
Jervell and Lange-Nielsen syndrome
Aneurysm of sinus of Valsalva
Non-familial dilated cardiomyopathy
Familial restrictive cardiomyopathy
Anomaly of the mitral subvalvular apparatus
Genetic cardiac rhythm disease
Coronary artery congenital malformation
Situs ambiguus
Dilated cardiomyopathy with ataxia
Unclassified cardiomyopathy
Generalized congenital lipodystrophy with myopathy
LMNA-related cardiocutaneous progeria syndrome
Aortic arch defects
Levocardia
Abnormal origin of the pulmonary artery
Congenital pulmonary valvar stenosis
Subpulmonary stenosis
Supravalvular pulmonary stenosis
Supravalvular aortic stenosis
Non-familial restrictive cardiomyopathy
Brugada syndrome
Dextrocardia
Noonan syndrome
Congenital heart block
Idiopathic pulmonary artery dilatation
Isolated congenitally uncorrected transposition of the great arteries
Familial idiopathic dilatation of the right atrium
Noonan syndrome-like disorder with loose anagen hair
Idiopathic giant cell myocarditis
Romano-Ward syndrome
Familial isolated dilated cardiomyopathy
Congenitally uncorrected transposition of the great arteries with cardiac malformation
Familial bicuspid aortic valve
Progressive sensorineural hearing loss-hypertrophic cardiomyopathy syndrome
Congenital anomaly of the great veins
Congenital aortic valve dysplasia
Dilated cardiomyopathy-hypergonadotropic hypogonadism syndrome
Pulmonary atresia-intact ventricular septum syndrome
Scimitar syndrome
Tricuspid atresia
Situs inversus totalis
Hypoplastic left heart syndrome
Familial dilated cardiomyopathy with conduction defect due to LMNA mutation
Mesocardia
Multifocal atrial tachycardia
His bundle tachycardia
Catecholaminergic polymorphic ventricular tachycardia
Congenital aortic valve insufficiency
Congenital aortic valve atresia
Congenital tricuspid stenosis
Double outlet right ventricle with subaortic or doubly committed ventricular septal defect with pulmonary stenosis
Congenitally uncorrected transposition of the great arteries with coarctation
Straddling or overriding tricuspid valve
Double outlet right ventricle with subpulmonary ventricular septal defect
Double outlet right ventricle with subaortic ventricular septal defect
Double outlet right ventricle with doubly committed ventricular septal defect
Tetralogy of Fallot
Accessory tricuspid valve tissue
Double outlet right ventricle with non-committed subpulmonary ventricular septal defect
Cleft mitral valve
Congenital mitral valve insufficiency and/or stenosis
Abnormal origin of right or left pulmonary artery from the aorta
Sino-auricular heart block
Discrete fibromuscular subaortic stenosis
Parachute tricuspid valve
Fatal infantile hypertrophic cardiomyopathy due to mitochondrial complex I deficiency
Inherited arrhythmogenic cardiomyopathy
Sinoatrial node dysfunction and deafness
Familial mitral valve prolapse
Anomaly of the tricuspid subvalvular apparatus
Pulmonary artery coming from patent ductus arteriosus
Discrete fixed membranous subaortic stenosis
Tunnel subaortic stenosis
Congenital anomaly of the tricuspid valve chordae
Valvular pulmonary stenosis
Congenital mitral stenosis
Congenital supravalvular mitral ring
Double-orifice mitral valve
Hypoplasia of the mitral valve annulus
Accessory mitral valve tissue
Congenital unguarded mitral orifice
Shone complex
Mitral valve agenesis
Straddling and/or overriding mitral valve
Complete atrioventricular septal defect with ventricular hypoplasia
Univentricular cardiopathy
Complete atrioventricular canal-left heart obstruction syndrome
Aortic arch interruption
Arterial duct anomaly
Univentricular heart with single atrio-ventricular valve
Combined oxidative phosphorylation defect type 17
Aneurysm or dilatation of ascending aorta
Complete atrioventricular septal defect-tetralogy of Fallot
Aorto-left ventricular tunnel
Aorto-right ventricular tunnel
Familial long QT syndrome
Congenital patent ductus arteriosus aneurysm
Congenital coronary artery aneurysm
Carvajal syndrome
Encircling double aortic arch
Abnormal origin or aberrant course of coronary artery
Kommerell diverticulum
Persistent fifth aortic arch
Neuhauser anomaly
Right aortic arch
Mitochondrial hypertrophic cardiomyopathy with lactic acidosis due to MTO1 deficiency
Pulmonary artery hypoplasia
Congenital anomaly of the inferior vena cava
Dysphagia lusoria
Congenital anomaly of superior vena cava
Coronary artery intramyocardial course
Right sided atrial isomerism
Peripheral pulmonary stenosis
Congenital anomaly of the coronary sinus
Coronary ostial stenosis or atresia
Aortopulmonary coronary arterial course
Abnormal number of coronary ostia
Intramural coronary arterial course
Congenital anomaly of hepatic vein
Malposition of a coronary ostium
Interventricular septum aneurysm
Congenital Gerbode defect
Atrial appendage anomaly
Laubry-Pezzi syndrome
Cor triatriatum sinister
Cor triatriatum dexter
Glycogen storage disease due to LAMP-2 deficiency
Ectasia of the right atrial appendage
Juxtaposition of the atrial appendages
Atrial septal defect, ostium secundum type
Congenital pericardium anomaly
Ectasia of the left atrial appendage
Atrial septal defect, sinus venosus type
Atrial septal defect, coronary sinus type
Atrial septal aneurysm
Atrial septal defect, ostium primum type
Persistent left superior vena cava connecting through coronary sinus to left-sided atrium
Patent foramen ovale
Persistent left superior vena cava connecting to the roof of left-sided atrium
Right superior vena cava connecting to left-sided atrium
Subaortic course of innominate vein
Absence of innominate vein
Agenesis of the superior vena cava
Coronary sinus stenosis
Tropical endomyocardial fibrosis
Right inferior vena cava connecting to left-sided atrium
Coronary sinus atresia
Idiopathic ventricular fibrillation, non Brugada type
Loeffler endocarditis
Azygos continuation of the inferior vena cava
Persistent eustachian valve
Complete atrioventricular septal defect
Inferior vena cava interruption without azygos continuation
Partial atrioventricular septal defect
Congenital stenosis of the inferior vena cava
Congenital total pulmonary venous return anomaly
Congenital partial pulmonary venous return anomaly
Infantile hypertrophic cardiomyopathy due to MRPL44 deficiency
Congenital complete agenesis of pericardium
Truncus arteriosus
Pleuro-pericardial cyst
Congenital partial agenesis of pericardium
Heart-hand syndrome type 3
X-linked intellectual disability-cardiomegaly-congestive heart failure syndrome
Atrial standstill
Cardiomyopathy-cataract-hip spine disease syndrome
Non-genetic cardiac rhythm disease
Mitochondrial DNA-related cardiomyopathy and hearing loss
Heart-hand syndrome type 2
Rare cardiac rhythm disease
Congenital valvular dysplasia
Aorto-ventricular tunnel
Uhl anomaly
Lown-Ganong-Levine syndrome
Familial atrial fibrillation
Pulmonary valve agenesis-tetralogy of Fallot-absence of ductus arteriosus syndrome
Ebstein malformation of the tricuspid valve
Congenital cataract-hypertrophic cardiomyopathy-mitochondrial myopathy syndrome
Heart-hand syndrome, Slovenian type
Double outlet right ventricle
Double outlet left ventricle
Familial progressive cardiac conduction defect
Brachydactyly-long thumb syndrome
Diabetic embryopathy
Holt-Oram syndrome
Familial sick sinus syndrome
Familial short QT syndrome
Idiopathic neonatal atrial flutter
Torsade-de-pointes syndrome with short coupling interval
Incessant infant ventricular tachycardia
Conotruncal heart malformations
Congenital mitral malformation
Rare familial disorder with hypertrophic cardiomyopathy
Glycogen storage disease due to muscle and heart glycogen synthase deficiency
Transposition of the great arteries and conotruncal cardiac anomaly
Heart position anomaly
Rare congenital non-syndromic heart malformation
Pulmonary artery or pulmonary branch anomaly
Aortic malformation
Congenital tricuspid malformation
Atrioventricular valve anomaly
Hypoplastic right heart syndrome
Atrioventricular septal defect
Ascending aorta anomaly
Congenital anomaly of the great arteries
Rare atrial defect and interatrial communication
Congenital pulmonary veins anomaly
Hypertrophic cardiomyopathy with kidney anomalies due to mitochondrial DNA mutation
Naxos disease
Rare cardiomyopathy
Noonan syndrome and Noonan-related syndrome
Autosomal dominant coarctation of aorta
Atypical coarctation of aorta
Cirrhotic cardiomyopathy
Aorta coarctation
Criss-cross heart
Isolated right ventricular hypoplasia
Triatrial heart
Univentricular heart
Noonan syndrome-like disorder with juvenile myelomonocytic leukemia
Heterotaxia
Interatrial communication
Atrial septal defect-atrioventricular conduction defects syndrome
Histiocytoid cardiomyopathy
ATTRV122I amyloidosis
Absence of the pulmonary artery
Rare hypertrophic cardiomyopathy
Glycogen storage disease with hypertrophic cardiomyopathy
Mitochondrial disease with hypertrophic cardiomyopathy
Noonan syndrome with multiple lentigines
Syndrome associated with hypertrophic cardiomyopathy
Coronary arterial fistula
Non-familial hypertrophic cardiomyopathy
Microcephaly-cardiomyopathy syndrome
Pulmonary valve agenesis
Tako-Tsubo cardiomyopathy
Endocardial fibroelastosis
Familial isolated restrictive cardiomyopathy
Left ventricular noncompaction
Congenital aortopulmonary window
Cardiomyopathy-hypotonia-lactic acidosis syndrome
Costello syndrome
10.54249414241159952.266217499999996Herzkind e.V.
Last updated:
23.01.2024