Interessengemeinschaft Das herzkranke Kind e.V. (IDHK)
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Description of patient organisation
Die Interessengemeinschaft Das herzkranke Kind e.V. (IDHK) wurde 1978 in Essen gegründet und hat das Ziel, herzkranken Kindern und ihren Familien zu helfen. Die Hilfe umfasst das gesundheitliche, erzieherische, berufliche und soziale Wohl der Betroffenen.
Die IDHK e.V. gehört dem im Juli 2014 gegründeten Aktionsbündnis Angeborene Herzfehler an. Das Bündnis setzt sich aus der IDHK e.V., dem Bundesverband Herzkranker Kinder e.V., der Bundesvereinigung JEMAH e.V., Fontanherzen e.V., Herzkind e.V. und der Kinderherzstiftung der Deutschen Herzstiftung e.V. zusammen. Ziel des Bündnisses ist die Verbesserung der Zusammenarbeit der Patientenorganisationen, um Kindern, Jugendlichen und Erwachsenen mit angeborenem Herzfehler sowie ihren Familien effektiver helfen zu können.
Die IDHK e.V. gehört dem im Juli 2014 gegründeten Aktionsbündnis Angeborene Herzfehler an. Das Bündnis setzt sich aus der IDHK e.V., dem Bundesverband Herzkranker Kinder e.V., der Bundesvereinigung JEMAH e.V., Fontanherzen e.V., Herzkind e.V. und der Kinderherzstiftung der Deutschen Herzstiftung e.V. zusammen. Ziel des Bündnisses ist die Verbesserung der Zusammenarbeit der Patientenorganisationen, um Kindern, Jugendlichen und Erwachsenen mit angeborenem Herzfehler sowie ihren Familien effektiver helfen zu können.
Care provisions
This support group organisation offers the following
- Regular meetings
- Regional associations / regional representatives
- Newsletter / Association journal
Preview of the represented diseases 2
HEC syndrome
Supravalvular aortic stenosis
Idiopathic pulmonary artery dilatation
Anomaly of the tricuspid subvalvular apparatus
Congenital complete agenesis of pericardium
Non-genetic cardiac rhythm disease
Congenital systemic veins anomaly
Familial bicuspid aortic valve
Double outlet right ventricle with subaortic or doubly committed ventricular septal defect with pulmonary stenosis
Accessory mitral valve tissue
Congenital unguarded mitral orifice
Neuhauser anomaly
Congenital Gerbode defect
Absence of innominate vein
Congenital cataract-hypertrophic cardiomyopathy-mitochondrial myopathy syndrome
Torsade-de-pointes syndrome with short coupling interval
Pulmonary artery or pulmonary branch anomaly
Atrioventricular valve anomaly
Dilated cardiomyopathy
Dilated cardiomyopathy with ataxia
Idiopathic ventricular fibrillation, non Brugada type
Mitochondrial disease with hypertrophic cardiomyopathy
Levocardia
Accessory tricuspid valve tissue
Loeffler endocarditis
Congenital valvular dysplasia
Autosomal dominant coarctation of aorta
Fixed subaortic stenosis
Familial idiopathic dilatation of the right atrium
Congenital supravalvular mitral ring
Kommerell diverticulum
Persistent fifth aortic arch
Laubry-Pezzi syndrome
Persistent left superior vena cava connecting to the roof of left-sided atrium
Aortic malformation
Generalized congenital lipodystrophy with myopathy
Aortic arch defects
Congenitally uncorrected transposition of the great arteries with coarctation
Atypical coarctation of aorta
Rare hypertrophic cardiomyopathy
Congenital aortic valve stenosis
Coronary artery congenital malformation
Congenital aortic valve atresia
Agenesis of the superior vena cava
Pleuro-pericardial cyst
Conotruncal heart malformations
Heterotaxia
Idiopathic giant cell myocarditis
Double outlet right ventricle with non-committed subpulmonary ventricular septal defect
Cleft mitral valve
Shone complex
Congenital anomaly of the inferior vena cava
Aorto-ventricular tunnel
Congenitally uncorrected transposition of the great arteries
Atrioventricular septal defect
Histiocytoid cardiomyopathy
Syndrome associated with dilated cardiomyopathy
Congenital anomaly of the great veins
Familial mitral valve prolapse
Aorta coarctation
Congenital partial agenesis of pericardium
Absence of the pulmonary artery
Congenital aortopulmonary window
Double outlet right ventricle with subpulmonary ventricular septal defect
Double outlet right ventricle with subaortic ventricular septal defect
Congenital mitral valve insufficiency and/or stenosis
Mitral valve agenesis
Inherited arrhythmogenic cardiomyopathy
Cervical aortic arch
Congenital anomaly of superior vena cava
Subaortic course of innominate vein
Truncus arteriosus
Glycogen storage disease due to muscle and heart glycogen synthase deficiency
Congenital tricuspid malformation
Hypertrophic cardiomyopathy due to intensive athletic training
Familial restrictive cardiomyopathy
Non-familial restrictive cardiomyopathy
Multifocal atrial tachycardia
Rare cardiac rhythm disease
Syndrome de Lown-Ganong-Levine
Malformation mitrale congénitale
Dysphagia lusoria
Coeur triatrial gauche
Syndrome de microcéphalie-cardiomyopathie
Syndrome d'agénésie de la valve pulmonaire-septum ventriculaire intact-persistance du canal artériel
Anomalie du canal artériel
Dilatation ou anévrisme congénital de l'aorte ascendante
Syndrome cardiomélique type slovène
Anomalie congénitale des artères de gros calibre
Tachycardie hisienne
Anomalie d'Uhl
Fibrillation auriculaire familiale
Fibroélastose endocardique
Insuffisance aortique congénitale
Ventricule droit à double issue avec communication interventriculaire sous-aortique et sous-pulmonaire
Straddling et/ou overriding de la valve mitrale
Cardiopathie univentriculaire
Arc aortique droit
Anomalie congénitale du sinus coronaire
Coeur triatrial droit
Syndrome cardio-facio-cutané
Syndrome du coeur droit hypoplasique
Agénésie des valves pulmonaires
Cardiomyopathie dilatée familiale
Syndrome de Brugada
Non-compaction ventriculaire gauche
Canal atrioventriculaire complet avec hypoplasie ventriculaire
Sténoses des branches pulmonaires
Ectasie de l'auricule droite
Bloc cardiaque congénital
Atrésie mitrale
Artère pulmonaire gauche ou droite d'origine aortique
Glycogénose par déficit en LAMP-2
Malformation cardiaque congénitale non syndromique rare
Syndrome d'Andersen-Tawil
Cardiomyopathie hypertrophique infantile par déficit en MRPL44
Coeur croisé
Interatrial communication
Pulmonary artery hypoplasia
Juxtaposition of the atrial appendages
Coronary sinus stenosis
Coronary sinus atresia
Heart-hand syndrome type 3
Glycogen storage disease with hypertrophic cardiomyopathy
Coronary arterial fistula
Dextrocardia
Dilated cardiomyopathy-hypergonadotropic hypogonadism syndrome
Familial dilated cardiomyopathy with conduction defect due to LMNA mutation
Pulmonary artery coming from patent ductus arteriosus
Complete atrioventricular canal-left heart obstruction syndrome
Ascending aorta anomaly
Sensorineural deafness with dilated cardiomyopathy
Inherited isolated arrhythmogenic cardiomyopathy
Abnormal origin of the pulmonary artery
Isolated congenitally uncorrected transposition of the great arteries
Congenital aortic valve dysplasia
Catecholaminergic polymorphic ventricular tachycardia
Tetralogy of Fallot
Premature closure of the arterial duct
Right sided atrial isomerism
Isolated right ventricular hypoplasia
Atrial septal defect-atrioventricular conduction defects syndrome
Discrete fibromuscular subaortic stenosis
Familial isolated restrictive cardiomyopathy
Progressive sensorineural hearing loss-hypertrophic cardiomyopathy syndrome
Brachydactyly-long thumb syndrome
Syndrome associated with hypertrophic cardiomyopathy
Non-familial dilated cardiomyopathy
Aneurysm of sinus of Valsalva
Situs ambiguus
Pulmonary atresia with ventricular septal defect
Triatrial heart
Jervell and Lange-Nielsen syndrome
Transposition of the great arteries
Univentricular heart with single atrio-ventricular valve
Complete atrioventricular septal defect-tetralogy of Fallot
Aortopulmonary coronary arterial course
Atrial septal defect, ostium secundum type
Persistent eustachian valve
Atrial standstill
Pulmonary atresia-intact ventricular septum syndrome
Scimitar syndrome
Situs inversus totalis
Hypoplastic left heart syndrome
Discrete fixed membranous subaortic stenosis
Aortic arch interruption
Rare atrial defect and interatrial communication
Cirrhotic cardiomyopathy
Univentricular heart
Anomaly of the mitral subvalvular apparatus
Fatal infantile hypertrophic cardiomyopathy due to mitochondrial complex I deficiency
Unclassified cardiomyopathy
Cardiac diverticulum
Tricuspid atresia
Coronary artery intramyocardial course
Ectasia of the left atrial appendage
Right inferior vena cava connecting to left-sided atrium
Cardiomyopathy-cataract-hip spine disease syndrome
Sino-auricular heart block
Congenital pericardium anomaly
X-linked intellectual disability-cardiomegaly-congestive heart failure syndrome
Tricuspid valve agenesis
Valvular pulmonary stenosis
Double-orifice mitral valve
Aorto-left ventricular tunnel
Congenital coronary artery aneurysm
Intramural coronary arterial course
Atrial septal defect, sinus venosus type
Complete atrioventricular septal defect
Congenital stenosis of the inferior vena cava
Double outlet right ventricle
Congenital pulmonary veins atresia or stenosis
Rare cardiac disease
Combined oxidative phosphorylation defect type 17
Diabetic embryopathy
Holt-Oram syndrome
Kidney tubulopathy-dilated cardiomyopathy syndrome
Inherited isolated arrhythmogenic cardiomyopathy, dominant-right variant
Genetic cardiac rhythm disease
Partial atrioventricular septal defect
Double outlet left ventricle
Tunnel subaortic stenosis
Aorto-right ventricular tunnel
Abnormal origin or aberrant course of coronary artery
Coronary ostial stenosis or atresia
Atrial appendage anomaly
Atrial septal defect, coronary sinus type
Azygos continuation of the inferior vena cava
Idiopathic neonatal atrial flutter
Congenital pulmonary veins anomaly
Naxos disease
Familial isolated dilated cardiomyopathy
Familial long QT syndrome
Carvajal syndrome
ATTRV122I amyloidosis
Congenital pulmonary valvar stenosis
Malposition of a coronary ostium
Atrial septal aneurysm
Congenital partial pulmonary venous return anomaly
Rare surgical cardiac disease
Congenital tricuspid stenosis
Parachute tricuspid valve
Familial progressive cardiac conduction defect
Incessant infant ventricular tachycardia
Non-familial hypertrophic cardiomyopathy
Restrictive cardiomyopathy
Subpulmonary stenosis
Romano-Ward syndrome
Congenitally uncorrected transposition of the great arteries with cardiac malformation
Congenital patent ductus arteriosus aneurysm
Abnormal number of coronary ostia
Atrial septal defect, ostium primum type
Inferior vena cava interruption without azygos continuation
Mitochondrial DNA-related cardiomyopathy and hearing loss
Costello syndrome
Tricuspid valve prolapse
Straddling or overriding tricuspid valve
Congenital anomaly of the tricuspid valve chordae
Familial sick sinus syndrome
Heart-hand syndrome type 2
Hypertrophic cardiomyopathy with kidney anomalies due to mitochondrial DNA mutation
Rare cardiomyopathy
Tako-Tsubo cardiomyopathy
Hypoplasia of the mitral valve annulus
Encircling double aortic arch
Interventricular septum aneurysm
Persistent left superior vena cava connecting through coronary sinus to left-sided atrium
Right superior vena cava connecting to left-sided atrium
Tropical endomyocardial fibrosis
Transposition of the great arteries and conotruncal cardiac anomaly
Inherited isolated arrhythmogenic cardiomyopathy, dominant-left variant
Mitochondrial disease with dilated cardiomyopathy
Congenitally corrected transposition of the great arteries
Supravalvular pulmonary stenosis
Timothy syndrome
Congenital pulmonary venous return anomaly
Pulmonary valve agenesis-tetralogy of Fallot-absence of ductus arteriosus syndrome
Familial short QT syndrome
Congenital mitral stenosis
Patent foramen ovale
Congenital total pulmonary venous return anomaly
Heart position anomaly
Cardiomyopathy-hypotonia-lactic acidosis syndrome
LMNA-related cardiocutaneous progeria syndrome
Mesocardia
Sinoatrial node dysfunction and deafness
Ebstein malformation of the tricuspid valve
Rare familial disorder with hypertrophic cardiomyopathy
Inherited isolated arrhythmogenic ventricular dysplasia, biventricular variant
Mitochondrial hypertrophic cardiomyopathy with lactic acidosis due to MTO1 deficiency
6.91720744999999951.492067199999994Interessengemeinschaft Das herzkranke Kind e.V. (IDHK)
Last updated:
23.01.2024