Support Resources.

Resources : Support  Glossary  Education  FAQs  Medical papers  Other good reads
General Support
General research.
Feinstein Institute for Medical Research :  [USA] Feinstein Institute A collaboration of creative thinkers who share a singular focus of advancing science to prevent disease and cure patients.
Medical Reference Guide :  [USA] University of Maryland Medical Center. Medically reviewed health content written in non technical language.

Genetic and Rare Diseases Information Center :  [USA] GARD Access to information on rare or genetic diseases in English or Spanish.
Genetics Home Reference:  [USA] GHR Information about the effects of genetic variation on human health

Medication names and availability vary from country to country. Your doctor should always be involved in any changes to medication.
Boots WebMD:  [UK] WebMD Aims to bring UK specific, GP reviewed health information.  [Intl.] International Contains information about medications in 185 countries with more than 40,000 medication names marketed outside the USA. Multiple languages.
Steroids:  [France] Cortisone-info Aims to help patients and families with practical information about corticosteroids and corticosteroid therapies.
WebMD USA:  [USA] WebMD Provider of health and medical information, support, and services.

British Dietetic Association :  [UK] Weight Wise Developed and managed the British Dietetic Association which represents registered dietitians in the UK. The website was funded by a project grant from the Department of Health and the content written by registered dietitians.

Rare diseases.
Genetic and Rare Diseases Information Center :  [USA] GARD Access to information on rare or genetic diseases in English or Spanish.
Orphanet :  [EU] Inventory of rare diseases and orphan drugs with classifications, led by a consortium of around 40 countries with expert resource search by country. More
National organization for rare disorders :  [USA] NORD Dedicated to individuals with rare diseases and the organizations that serve them through programs of education, advocacy, research, and patient services.
Rare Diseases Europe :  [EU] EURODIS Alliance of patient organisations and individuals, dedicated to improving the quality of life of people living with rare diseases in Europe.

Vasculitis associated.
American Partnership for Eosinophilic Disorders. :  [USA] APFED Patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders.
CSS Association :  [USA] CSSA Focus on EGPA (CSS). Volunteer network of patients, friends, and medical professionals.
Lauren Currie Twilight Foundation, The :  [UK] Twilight Charity providing support for vasculitis patients.
Vasculitis Foundation :  [USA] Vasculitis Foundation Charity dedicated to helping patients, provide information, spread awareness, and encourage research into vasculitis.
Vasculitis UK :  [UK] Vasculitis UK Charity providing information and advice for sufferers and support for local vasculitis groups and medical research.

Support relating to each body system.
Cardiovascular / Circulatory system.
British Heart Foundation :  [UK] BHF Charity providing information and advice to those affected by heart disease and funding research into the causes and treatment.
Cardiomyopathy :  [UK] Cardiomyopathy UK Charity providing support, information and advice to those affected by cardiomyopathy.

American Partnership for Eosinophilic Disorders :  [USA] Apfed A nonprofit organization founded by a group of mothers of young children living with eosinophil associated diseases dedicated to improving the lives of those living with eosinophilic disorders.
International Eosinophil Society:  [USA] IES. Scientists and clinicians interested in the eosinophil, sponsors meetings to review eosinophil roles in health and disease.

Digestive / Excretory system.
Bladder & Bowel Foundation :  [UK] BBF Charity which provides information and support services, including a confidential helpline, for anyone affected by these conditions as well as their families, carers and healthcare professionals.
British Society of Gastroenterology :  [UK] BSG Professional organisation and affiliated Charity focused on the promotion of gastroenterology. Involved with training and original research. Has a patient area.

British Liver Trust :  [UK] British Liver Trust Charity campaigning for best care, treatment, support, prevention and awareness.Increasing Knowledge about the Liver through research.

Endocrine system.
The Pituitary Foundation :  [UK] Pituitary Foundation Charity supporting those with pituitary conditions, informing health professionals and raising awareness.

Integumentary / Exocrine system.
British Association of Dermatologists :  [UK] BAD Charity for practice, teaching, training and research of Dermatology, advising on best practice and the provision of Dermatology services.
DermNet New Zealand Trust:  [NZ] DermNet NZ. A charity and resource all about the skin.
ITSAN:  [USA] ITSAN Red Skin Syndrome support. Raising awareness of Red Skin Syndrome (RSS) and support for individuals as they progress through the phases of Topical Steroid Addiction and Withdrawal (TSA/TSW).
International Hyperhidrosis Society :  [USA] Hyperhidrosis Society Charity with the mission to reduce the symptoms, anxiety, and social stigma associated with excessive sweating.
Leg Ulcer Charity :  [UK] Cardiomyopathy UK Charity which aims at empowering patients, families and carers to understand their condition and to find a cure if possible.

Lymphatic / Immune system.
Allergy UK :  [UK] Allergy UK Charity supporting allergy sufferers in the UK. Dedicated helpline, support network and online forum. Educational programs.
World Allergy Organization :  [USA] WAO International umbrella organization for national allergology and clinical immunology societies, providing direct education programs, symposia and lectureships to members.

Immune system-.
British Society for Immunology :  [UK] BSI Promotes and supports research, scholarship and clinical practice in immunology.

Musculoskeletal System.
The Arthritis and Musculoskeletal Alliance :  [UK] ARMA An alliance providing a collective voice for the arthritis and musculoskeletal community with 40 member organisations ranging from specialised support groups for rare diseases to major research charities and national professional bodies.
Arthritis Research UK:  [UK] Arthritis Research UK Charity with a commitment to prevent onset, develop a cure and transform the lives of those with arthritis.

British Society for Rheumatology, The :  [UK] BSR Professional association for rheumatology, musculoskeletal and long term conditions. Has a patient area.
European League Against Rheumatism :  [CH] EULAR Charity involved in education and research in the field of rheumatology.

BackCare :  [UK] Backcare Charity providing information and advice to those affected by back pain and funding research into the causes, prevention and management.
National Osteoporosis Society :  [UK] NOS Charity dedicated to improving the diagnosis, prevention and treatment of osteoporosis and fragility fractures.

Nervous system.
Foundation For Peripheral Neuropathy:  [USA] FPN Charity committed to collaboration among neuroscientists and physicians to develop new and effective therapies that can reverse, reduce and ultimately eliminate Peripheral Neuropathy.

Nerve related conditions-.
Restless Legs Syndrome :  [UK] RLS UK also known as Willis-Ekbom disease. A charity with the goal of improving quality of life for people living with RLS and raising awareness of RLS among medical practitioners and the general public.

Renal / Urinary system.
Kidney Research UK :  [UK] Kidney Research UK Charity dedicated to research into the causes and prevention of kidney disease, raising awareness and providing a patient information service.

Respiratory system.
British Lung Foundation:  [UK] BLF Charity supporting research to increase survival rates, improve diagnosis, treatment and care, and develop our understanding of lung diseases.

Support resources help.

Important. There are many options to finding good medical help, whether it is your GP, hospital or in literature!

The links on this page attempt to provide a starting point to help in finding out more about your own condition and are not recommendations. This site has no control over the content of external links.

Never change your medication regime except under advise of your doctor.

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