Heart / Cardiology Conditions
Congenital
Heart Defects including: atrial septal defect (ASD), ventricular
septal defect (VSD), patent ductus arteriosus (PDA), endocardial cushion defect,
aortic stenosis, pulmonary stenosis, coarctation of the aorta, tetralogy of
Fallot, tricuspid atresia, transposition of the great arteries, truncus
arteriosus, Ebstein anomaly, anomalous pulmonary venous connection, hypoplastic
left heart syndrome, endocardial fibroelastosis, Long QT, other conditions and syndromes (Marfan, Down, Holt Oram,
Barth, Hypertrophic Cardiomyopathy, Kawasaki, Noonan, Turner , Velo-Cardio-Facial,
other)
Cardiovascular
conditions including: hyperlipidemia, coronary artery disease, angina,
cholesterol and lipid conditions, heart disease/stroke
- CHASER
(Congenital Heart Anomalies Support, Education, and Resources)
- c/o Jim and Anita Myers
- 2112 North Wilkins Road
- Swanton, OH 43558
- Phone: (419) 825-5575
- Fax: (419) 825-2880
- E-mail: myer106w@wonder.em.cdc.gov
or 75050.2742@compuserve.com
- Web site: http://www.csun.edu/~hfmth006/chaser/
-
- Adult
Congenital Heart Network, Canadian Adult Congenital Heart Network, Toronto Congenital
Cardiac Centre for Adults, and International Society Of Adult Congenital Cardiac
Disease
- Congenital
Heart Information Network
-
- Families with Heart
- 824 High Street, Candia,
NH 03034-2004
- Phone: 603.483.3025
- Web site:
(web site not active Mar 2003)
-
- Support groups by condition and location
Congenital
Heart Disease, Children's Health
Information Network, includes international
support groups
- Adult
Congenital Heart Association (ACHA)
- Congenital heart defects
and cardiovascular conditions
- CachNet, Canadian Adult Congenital Heart Network,Toronto Congenital
Cardiac Centre For Adults, and International Society for Adult Congenital
Cardiac Disease
Grown
Up Congenital Heart Patients Association (GUCH), United
Kingdom
Children's
Heart Society, Alberta, Canada
Special
Hearts Online, Southern Ontario, Canada
UK
and Overseas Hearlink, United Kingdom
HeartKids, Victoria, Australia
HeartKids,
Inc., South Australia
Other heart condition
sites:
- Evaluation of Heart Murmurs
in Children & Adolescents, LMattioli, Univ. Kansas Medical
Center
- Cardiac
Medications Used in Children
- Congenital
Heart Disease Online Handbook, definitions, abbreviations,
surgeries, adult issues, diagnosis, medications
- The
Congenital Heart Disease Resource Page, SBerger
- Congenital
Heart Defects, Texas Heart Institute
- Grandparents
of kids with Congenital Heart Defects
- Heart
Preview Gallery - virtual tour of human heart (movies,
diagrams, x-ray images,on-line activities, heartbeats & murmurs, teacher
resources, activities, & other heart-related sites)
- The
Heart: An Online Exploration explore the heart,
complexities of its development & structure, follow the blood through
the blood vessels
- PediHeart,
HAHennein, information for kids, parents, practitioners, Normal Heart,
Normal Circulation
Conditions
with heart defects / cardiovascular involvement
- Arrhythmogenic
Right Ventricular Dysplasia, Cardiology Johns Hopkins
Hospital
- Barth
syndrome Family Network
- Down
Syndrome
- Familial
Dilated Cardiomyopathy (FDC) Project, Oregon Health Sciences
University (OHSU)
- Hemitruncus
Arteriosus
- Hypertrophic
Cardiomyopathy
- Hypoplastic
Left Heart, family stories, other links, Healthlink
USA
- Hypoplastic
Left Heart Syndrome, United Kingdom
- Kara
Mia, book, young girl with Long QT Syndrome
- Kawasaki
Families' Network
- Long
QT Genetics, DNA Sciences
- Marfan
Syndrome
- Noonan
Syndrome
- Non
Cardiac Defects in Children with Congenital Heart Disease, Jaiyesimi
& Ruberu
- Holt Oram:
Variation in severity of cardiac disease in Holt-Oram syndrome ISSN0148-7299.
Amer J Medical Genetics Vol. 65(2):128-132, Oct 16, 1996, Wiley-Liss, Inc.
- Turner
Syndrome
- Velo-Cardio-Facial
Syndrome
Heart / Cardiology / Surgery
/ Pathology / Echocardiology
Other Cardiovascular
sites:
Also See:
- National
organizations genetic conditions or birth defects resources
- Shadow
Buddies, dolls made with congenital heart surgery repair, Down Syndrome,
other
- Cut
to the Heart, NOVA program
- Congenital
Heart Defect Abbreviations
- Congenital
Heart Defects, Heartpoint
- Congenital
Heart Defects Resource Page
- Dr.
Mani Explains Defects
- Heart
DiseaseOnline
- The
Normal Heart - How it works, American Heart Association
- Normal
Newborn Heart, Normal
Heart, Heart Valves,
Normal
Circulation, Royal Children's Hospital - Melbourne,
Australia
- Pediatric
Cardiology for Patients & Parents
- Pediatric
Cardiology Almanac
- Tetralogy
of Fallot
- Tetralogy
of Fallot 2
- Valvular
Heart Disease
To
locate a genetic counselor or clinical geneticist:
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Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu
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