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
                        
                    
                        
                        
                        Mitral atresia
                        
                    
                        
                        
                        Abnormal origin of right or left pulmonary artery from the aorta
                        
                    
                        
                        
                        Glycogen storage disease due to LAMP-2 deficiency
                        
                    
                        
                        
                        Rare congenital non-syndromic heart malformation
                        
                    
                        
                        
                        Andersen-Tawil syndrome
                        
                    
                        
                        
                        Infantile hypertrophic cardiomyopathy due to MRPL44 deficiency
                        
                    
                        
                        
                        Criss-cross heart
                        
                    
                        
                        
                        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