SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

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.

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).

Contact

0531 220660
info@herzkind.de
Website

http://www.herzkind.de/

Address

Husarenstraße 70
38102 Braunschweig

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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