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
Lown-Ganong-Levine syndrome
Congenital mitral malformation
Dysphagia lusoria
Cor triatriatum sinister
Microcephaly-cardiomyopathy syndrome
Pulmonary valve agenesis-intact ventricular septum-persistent ductus arteriosus syndrome
Arterial duct anomaly
Aneurysm or dilatation of ascending aorta
Heart-hand syndrome, Slovenian type
Congenital anomaly of the great arteries
His bundle tachycardia
Uhl anomaly
Familial atrial fibrillation
Endocardial fibroelastosis
Congenital aortic valve insufficiency
Double outlet right ventricle with doubly committed ventricular septal defect
Straddling and/or overriding mitral valve
Univentricular cardiopathy
Right aortic arch
Congenital anomaly of the coronary sinus
Cor triatriatum dexter
Cardiofaciocutaneous syndrome
Hypoplastic right heart syndrome
Pulmonary valve agenesis
Familial dilated cardiomyopathy
Brugada syndrome
Left ventricular noncompaction
Complete atrioventricular septal defect with ventricular hypoplasia
Peripheral pulmonary stenosis
Ectasia of the right atrial appendage
Congenital heart block
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
Communication interauriculaire
Hypoplasie de l'artère pulmonaire
Juxtaposition des auricules
Sténose du sinus coronaire
Atrésie du sinus coronaire
Syndrome coeur-main type 3
Maladie de stockage du glycogène avec cardiomyopathie hypertrophique
Fistule coronaire
Dextrocardie
Syndrome de cardiomyopathie dilatée-hypogonadisme hypergonadotrope
Cardiomyopathie dilatée familiale avec trouble de la conduction due à une mutation de LMNA
Artère pulmonaire naissant du canal artériel
Canal atrioventriculaire complet-anomalies obstructives du coeur gauche
Anomalie de l'aorte ascendante
Surdité neurosensorielle avec cardiomyopathie dilatée
Cardiomyopathie arythmogène héréditaire isolée
Artère pulmonaire d'origine anormale
Transposition isolée congénitalement non corrigée des gros vaisseaux
Dysplasie valvulaire aortique congénitale
Tachycardie ventriculaire polymorphe catécholaminergique
Tétralogie de Fallot
Fermeture anténatale du canal artériel
Isomérisme atrial droit
Hypoplasie ventriculaire droite isolée
Syndrome de communication interauriculaire-trouble de la conduction atrioventriculaire
Sténose subaortique fibromusculaire modérée
Cardiomyopathie restrictive familiale isolée
Syndrome de surdité neurosensorielle progressive-cardiomyopathie hypertrophique
Syndrome de pouce long-brachydactylie
Syndrome associé à une cardiomyopathie hypertrophique
Cardiomyopathie dilatée non familiale
Anévrisme du sinus de Valsalva
Situs ambiguus
Syndrome d'atrésie pulmonaire-communication interventriculaire
Coeur triatrial
Syndrome de Jervell et Lange-Nielsen
Transposition des gros vaisseaux
Coeur univentriculaire à valve auriculoventriculaire unique
Canal atrioventriculaire complet-tétralogie de Fallot
Coronaire interaortopulmonaire
Anomalie du septum atrial type ostium secundum
Valve d'Eustache persistante
Syndrome de cardiomyopathie auriculaire-bloc cardiaque
Syndrome d'atrésie pulmonaire-septum ventriculaire intact
Syndrome du cimeterre
Situs inversus total
Hypoplasie du coeur gauche
Sténose subaortique membraneuse modérée
Interruption de la crosse aortique
Communication interatriale ou anomalie auriculaire rare
Cardiomyopathie cirrhotique
Coeur univentriculaire
Anomalie de l'appareil mitral subvalvulaire
Cardiomyopathie hypertrophique infantile létale par déficit en NADH-CoQ réductase
Cardiomyopathie non classée
Diverticule du coeur
Atrésie tricuspide
Coronaire intramyocardique
Ectasie de l'auricule gauche
Drainage anormal de la veine cave inférieure dans l'oreillette gauche
Syndrome de cardiomyopathie-cataracte-anomalies spondylo-pelviennes
Bloc sino-auriculaire familial
Anomalie congénitale du péricarde
Syndrome de déficience intellectuelle liée à l'X-cardiomégalie-insuffisance cardiaque congénitale
Agénésie des valves tricuspides
Sténose valvulaire pulmonaire
Double orifice de la valve mitrale
Tunnel aorto-ventriculaire gauche
Anévrisme congénital des artères coronaires
Coronaire intramurale
Communication interauriculaire type sinus venosus
Canal atrioventriculaire complet
Sténose congénitale de la veine cave inférieure
Ventricule droit à double issue
Atrésie ou sténose congénitale des veines pulmonaires
Maladie cardiaque rare
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