Thursday, 9 February 2012
EquipLinks: Genetic disorders
Become an Expert Patient
Attend an Expert Patients course and take control of your long-term condition. Find ways to control your symptoms so you can live the life you want. Expert patient courses take place over six weeks (2.5 hours a week) and are led by people who, themselves, live with a long-term medical condition.
This resource was last checked on: 28 September 2011
British Society for Paediatric Endocrinology and Diabetes
Contains information written by a specialist doctor on: Achondroplasia, Congenital Adrenal Hyperplasia (21 hydroxylase), Congenital Adrenal Hyperplasia (11 hydroxylase), Congenital Adrenal Hyperplasia - treatment in pregnancy, Complete Androgen Insensitivity Syndrome (CAIS), Congenital Hypothyroidism, Coeliac Disease, Delayed Puberty, Diabetes Insipidus, Grave's Disease (Thyrotoxicosis), Growing Pains, Gynaecomastia, Hypopituitarism, Hypothyroidism (Acquired), Klinefelter's Syndrome, Labial Adhesions, Marfan's Syndrome, Overweight, Partial Androgen Insensitivity Syndrome (PAIS), Precocious Puberty, Steroid Replacement, Steroid Treatment, Tall Stature, Turner's Syndrome
This resource was last checked on: 18 May 2011
Child Growth Foundation
Information on growth conditions including: Bone Dysplasias, Endocrine Gland Disorders, Growth Hormone Deficiency, Intrauterine Growth Retardation (IUGR) including Russell Silver Syndrome, Premature Sexual Maturation (PSM), Precocious Puberty, Sotos Syndrome, Turner Syndrome.
This resource was last checked on: 17 October 2011
Contact a Family
Information and support on many specific conditions and rare disorders written by doctors
This resource was last checked on: 04 July 2011
Easy Health
This website includes: Health leaflets that are easy to understand; Films showing visits to health professionals; Information for patients on improving your health and wellbeing ; Information for health professionals on improving the way you work; Useful help-lines and other websites. Topics include: Abuse, Ageing, Alcohol, Asthma, Autism, Blood Test, Bowel and Bladder, Breast examination, Calling an ambulance, Cancer, Chemist, Colds and flu, CT Scan, Death, Dementia, Dentist, Depression, Diabetes, Down syndrome, Ears, Epilepsy, Exercise, Eyes, Feeling upset, Grief, Healthy activities, Healthy eating, Hearing, Heart disease, Hernia, Hospitals, Hygiene, Hypertension, Love and sex, Maternity, Medication, Menopause, Old age, Pain and discomfort, Periods, Physiotherapy, Sexual health, Smear test, Smoking, Staying healthy, Stomach, Sunburn, Teeth, Testicles, Weight
This resource was last checked on: 09 January 2012
Genetic Alliance UK
A national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders. Has publications about genetic testing and many conditions: Cystic Fibrosis, Di George Syndrome, Fragile X Syndrome, Huntington's Disease, Klinefelter Syndrome, Marfan Syndrome, Myotonic dystrophy, Neurofibromatosis type 1, Turner Syndrome, Triple X Syndrome, XYY syndrome, Familial hypercholesterolaemia, genetic deafness, Bowel Cancer, Breast Cancer, Hereditary non polyposis colon cancer available in: Arabic, Farsi, Gujarati, Punjabi, Somali (audio), Sylheti (audio), Turkish, Urdu
This resource was last checked on: 13 April 2011
Haemophilia Care
Information about haempohilia and living with the condition.
This resource was last checked on: 09 January 2012
Rare Chromosome Disorder Support Group
Has detailed online information and also a large membership of people with many different rare chromosome disorders
This resource was last checked on: 05 July 2011
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