SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

Bundesvereinigung JEMAH e.V. (Jugendliche und Erwachsene mit angeborenem Herzfehler)

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Description of patient organisation

Die Bundesvereinigung JEMAH e.V. (Jugendliche und Erwachsene mit angeborenem Herzfehler) ist ein eingetragener Verein, der 1997 von Betroffenen, die bereits mit einem angeborenem Herzfehler das Erwachsenenalter erreicht haben, gegründet wurde.
Etwa jedes 100. Neugeborene hat einen angeborenen Herzfehler, davon erreichen mittlerweile gut 90 % das Erwachsenenalter. In Deutschland leben derzeit ca. 200.000 JEMAHs (Quelle: Kompetenznetz angeborene Herzfehler, Berlin). Einschränkungen körperlicher Natur, Krankenhausaufenthalte und ständige Gedanken um die eigene Gesundheit sowie auch die Sorgen von Familie und Freunden kennen die meisten JEMAHs ihr Leben lang. Häufig empfinden die Betroffenen, nachdem sie im Jugend- und Erwachsenenalter dann eigenverantwortlich mit ihrer Diagnose konfrontiert werden, Gefühle wie Enttäuschung, Schock, Trauer und Wut. Aus Erfahrungen weiß der Verein, dass insbesondere das Gefühl der Einsamkeit groß ist. Deshalb setzt sich JEMAH e.V. aktiv für folgende Dinge besonders ein:
Erfahrungsaustausch zwischen Selbstbetroffenen, Veröffentlichung eines Vereinsmagazins, Veranstaltung und Mitwirkung bei Symposien mit Ärzten und anderen Fachleuten, Internetseite (https://www.jemah.de/), regionale Gruppentreffen in fast allen Bundesländern, bundesweite Treffen, Information zu sozialrechtlicher und psychosozialer Hilfe oder zahlreiche offene online Angebote über ein sicheres Konferenzsystem.

Care provisions

This support group organisation offers the following
  • Internal forum
  • Regular meetings
  • Regional associations / regional representatives

Contact

05331 92784850
info@jemah.de
Website

https://www.jemah.de/

Address

Am Exer 19a
38302 Wolfenbüttel

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Preview of the represented diseases 2

Congenitally uncorrected transposition of the great arteries with coarctation Congenital supravalvular mitral ring Persistent fifth aortic arch Infantile hypertrophic cardiomyopathy due to MRPL44 deficiency Aortic malformation Congenital pulmonary venous return anomaly Levocardia Supravalvular pulmonary stenosis Familial dilated cardiomyopathy with conduction defect due to LMNA mutation Accessory tricuspid valve tissue Right superior vena cava connecting to left-sided atrium Loeffler endocarditis Glycogen storage disease due to muscle and heart glycogen synthase deficiency Hypertrophic cardiomyopathy due to intensive athletic training Non-familial restrictive cardiomyopathy Hypoplasia of the mitral valve annulus Encircling double aortic arch Interventricular septum aneurysm Transposition of the great arteries and conotruncal cardiac anomaly Cardiomyopathy-hypotonia-lactic acidosis syndrome Familial restrictive cardiomyopathy HEC syndrome Mesocardia Straddling or overriding tricuspid valve Ebstein malformation of the tricuspid valve Supravalvular aortic stenosis Idiopathic pulmonary artery dilatation Tropical endomyocardial fibrosis Pulmonary valve agenesis-tetralogy of Fallot-absence of ductus arteriosus syndrome Congenital cataract-hypertrophic cardiomyopathy-mitochondrial myopathy syndrome Familial short QT syndrome Inherited isolated arrhythmogenic ventricular dysplasia, biventricular variant Congenital systemic veins anomaly Persistent left superior vena cava connecting through coronary sinus to left-sided atrium Familial sick sinus syndrome Tako-Tsubo cardiomyopathy Noonan syndrome with multiple lentigines Dilated cardiomyopathy with ataxia Congenital valvular dysplasia Autosomal dominant coarctation of aorta Congenital mitral valve insufficiency and/or stenosis Accessory mitral valve tissue Neuhauser anomaly Congenital anomaly of superior vena cava Congenital Gerbode defect Absence of innominate vein Congenital complete agenesis of pericardium Atrioventricular valve anomaly Fixed subaortic stenosis Familial idiopathic dilatation of the right atrium Congenitally uncorrected transposition of the great arteries with cardiac malformation Familial bicuspid aortic valve Double outlet right ventricle with subaortic or doubly committed ventricular septal defect with pulmonary stenosis Double outlet right ventricle with subaortic ventricular septal defect Torsade-de-pointes syndrome with short coupling interval Coronary artery congenital malformation Aortic arch defects Atypical coarctation of aorta Heterotaxia Congenital aortic valve stenosis Anomaly of the tricuspid subvalvular apparatus Persistent left superior vena cava connecting to the roof of left-sided atrium Conotruncal heart malformations Histiocytoid cardiomyopathy Noonan syndrome-like disorder with loose anagen hair Congenital unguarded mitral orifice Kommerell diverticulum Laubry-Pezzi syndrome Aorto-ventricular tunnel Pulmonary artery or pulmonary branch anomaly Glycogen storage disease with hypertrophic cardiomyopathy Familial mitral valve prolapse Congenitally uncorrected transposition of the great arteries Aorta coarctation Congenital aortic valve insufficiency Double outlet right ventricle with non-committed subpulmonary ventricular septal defect Shone complex Agenesis of the superior vena cava Pleuro-pericardial cyst Atrioventricular septal defect Absence of the pulmonary artery Congenital aortopulmonary window Inherited isolated arrhythmogenic cardiomyopathy, dominant-right variant Sensorineural deafness with dilated cardiomyopathy Inherited arrhythmogenic cardiomyopathy Univentricular cardiopathy Congenital anomaly of the coronary sinus Truncus arteriosus X-linked intellectual disability-cardiomegaly-congestive heart failure syndrome Inherited isolated arrhythmogenic cardiomyopathy Multifocal atrial tachycardia Lown-Ganong-Levine syndrome Congenital mitral malformation Microcephaly-cardiomyopathy syndrome Congenital aortic valve atresia Subaortic course of innominate vein Congenital partial agenesis of pericardium Congenital tricuspid malformation Double outlet right ventricle with subpulmonary ventricular septal defect Cleft mitral valve Mitral valve agenesis Arterial duct anomaly Cervical aortic arch Congenital anomaly of the inferior vena cava Right sided atrial isomerism His bundle tachycardia Idiopathic ventricular fibrillation, non Brugada type Familial atrial fibrillation Mitochondrial disease with hypertrophic cardiomyopathy Left ventricular noncompaction Dilated cardiomyopathy Pulmonary valve agenesis-intact ventricular septum-persistent ductus arteriosus syndrome Dysphagia lusoria Cor triatriatum sinister Coronary sinus stenosis Cardiofaciocutaneous syndrome Uhl anomaly Congenital anomaly of the great arteries Pulmonary valve agenesis Endocardial fibroelastosis Isolated congenitally uncorrected transposition of the great arteries Congenital aortic valve dysplasia Generalized congenital lipodystrophy with myopathy Brugada syndrome Andersen-Tawil syndrome Rare hypertrophic cardiomyopathy Double outlet right ventricle with doubly committed ventricular septal defect Straddling and/or overriding mitral valve Right aortic arch Cor triatriatum dexter Non-genetic cardiac rhythm disease Hypoplastic right heart syndrome Mitral atresia Aneurysm or dilatation of ascending aorta Inherited isolated arrhythmogenic cardiomyopathy, dominant-left variant Anomaly of the mitral subvalvular apparatus Ectasia of the left atrial appendage Right inferior vena cava connecting to left-sided atrium Heart-hand syndrome type 3 Criss-cross heart Interatrial communication Coronary arterial fistula Dextrocardia Sinoatrial node dysfunction and deafness Abnormal origin of right or left pulmonary artery from the aorta Complete atrioventricular septal defect with ventricular hypoplasia Coronary artery intramyocardial course Peripheral pulmonary stenosis Glycogen storage disease due to LAMP-2 deficiency Rare atrial defect and interatrial communication Abnormal origin of the pulmonary artery Congenital heart block Dilated cardiomyopathy-hypergonadotropic hypogonadism syndrome Catecholaminergic polymorphic ventricular tachycardia Mitochondrial hypertrophic cardiomyopathy with lactic acidosis due to MTO1 deficiency Hypertrophic cardiomyopathy with kidney anomalies due to mitochondrial DNA mutation Isolated right ventricular hypoplasia Premature closure of the arterial duct Atrial septal defect-atrioventricular conduction defects syndrome Familial isolated restrictive cardiomyopathy Unclassified cardiomyopathy Pulmonary atresia with ventricular septal defect Pulmonary artery coming from patent ductus arteriosus Complete atrioventricular canal-left heart obstruction syndrome Pulmonary artery hypoplasia Ectasia of the right atrial appendage Juxtaposition of the atrial appendages Coronary sinus atresia Rare congenital non-syndromic heart malformation Ascending aorta anomaly Aneurysm of sinus of Valsalva Situs ambiguus Brachydactyly-long thumb syndrome Triatrial heart Genetic cardiac rhythm disease Coronary ostial stenosis or atresia Atrial septal defect, coronary sinus type Azygos continuation of the inferior vena cava Congenital pulmonary veins anomaly Jervell and Lange-Nielsen syndrome Pulmonary atresia-intact ventricular septum syndrome Hypoplastic left heart syndrome Tunnel subaortic stenosis Aortic arch interruption Aorto-right ventricular tunnel Atrial standstill Heart-hand syndrome, Slovenian type Scimitar syndrome Combined oxidative phosphorylation defect type 17 Univentricular heart Familial dilated cardiomyopathy Cardiac diverticulum Sino-auricular heart block Fatal infantile hypertrophic cardiomyopathy due to mitochondrial complex I deficiency Atrial septal defect, ostium secundum type Persistent eustachian valve Discrete fixed membranous subaortic stenosis Discrete fibromuscular subaortic stenosis Univentricular heart with single atrio-ventricular valve Complete atrioventricular septal defect-tetralogy of Fallot Aortopulmonary coronary arterial course Cardiomyopathy-cataract-hip spine disease syndrome Cirrhotic cardiomyopathy Congenitally corrected transposition of the great arteries Congenital anomaly of the great veins Tricuspid atresia Situs inversus totalis Congenital pericardium anomaly Tricuspid valve agenesis Congenital anomaly of the tricuspid valve chordae Double-orifice mitral valve Congenital patent ductus arteriosus aneurysm Congenital coronary artery aneurysm Abnormal number of coronary ostia Atrial septal defect, ostium primum type Complete atrioventricular septal defect Inferior vena cava interruption without azygos continuation Double outlet right ventricle Idiopathic neonatal atrial flutter Naxos disease Restrictive cardiomyopathy Diabetic embryopathy Holt-Oram syndrome Non-familial hypertrophic cardiomyopathy Congenital pulmonary veins atresia or stenosis Noonan syndrome Idiopathic giant cell myocarditis Partial atrioventricular septal defect Double outlet left ventricle Rare cardiomyopathy Kidney tubulopathy-dilated cardiomyopathy syndrome Rare cardiac disease Valvular pulmonary stenosis Aorto-left ventricular tunnel Intramural coronary arterial course Congenital anomaly of hepatic vein Atrial septal defect, sinus venosus type Congenital stenosis of the inferior vena cava Incessant infant ventricular tachycardia Noonan syndrome-like disorder with juvenile myelomonocytic leukemia Familial isolated dilated cardiomyopathy Congenital pulmonary valvar stenosis Familial long QT syndrome Patent foramen ovale Heart position anomaly Noonan syndrome and Noonan-related syndrome Transposition of the great arteries Congenital tricuspid stenosis Congenital mitral stenosis Familial progressive cardiac conduction defect Rare familial disorder with hypertrophic cardiomyopathy Mitochondrial disease with dilated cardiomyopathy LMNA-related cardiocutaneous progeria syndrome Subpulmonary stenosis Timothy syndrome Atrial septal aneurysm Congenital total pulmonary venous return anomaly Congenital partial pulmonary venous return anomaly Rare surgical cardiac disease Tricuspid valve prolapse Parachute tricuspid valve Malposition of a coronary ostium Mitochondrial DNA-related cardiomyopathy and hearing loss Costello syndrome Non-familial dilated cardiomyopathy Romano-Ward syndrome Progressive sensorineural hearing loss-hypertrophic cardiomyopathy syndrome Carvajal syndrome Abnormal origin or aberrant course of coronary artery Atrial appendage anomaly ATTRV122I amyloidosis Heart-hand syndrome type 2 Syndrome associated with hypertrophic cardiomyopathy Syndrome associated with dilated cardiomyopathy Tetralogy of Fallot Rare cardiac rhythm disease
10.55870188139726652.1827447Bundesvereinigung JEMAH e.V. (Jugendliche und Erwachsene mit angeborenem Herzfehler)
Last updated: 23.01.2024