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Links:- ITP and medical sites
These links are to charities and to government and commercial organisations, some based in the UK, some based abroad. It is best to determine the publisher of any information presented before you make any decision about the impartiality of what you may find on these external sites.
Sites run by doctors and health organisations
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UK ITP Forum. The ITP Clinical Centres website is intended as a resource for health professionals and to create a network of coordinated expertise to encourage better management, research and clinical trials.
UK ITP Registry. A website to assist haematologists who want to take part in three UK Registries (Adult ITP, Familial ITP and Evans’ Syndrome), as well as providing additional information which will be of interest to patients with ITP.
UK Paediatric Chronic ITP Registry The UK Paediatric ITP registry is a multi-centre study designed to collect prospective data on all new cases of childhood immune thrombocytopenic purpura (ITP)
Patient UK provides information on health, disease and related issues and a useful Medicines A–Z which gives information on drugs including how they work, what they are used for, warnings and cautions, side effects and their effect on other medicines.
Haematology Glossary – the American Society of Haematology has an excellent glossary of Haematology terms
Traveldoctor.co.uk, A site giving comprehensive information and advice on all issues relating to traveller’s health including vaccinations, travel medicines, diseases and first aid.
Quackwatch, an international organisation that highlights the less reliable aspects of medical treatment and raises awareness of health fraud.
Other Support Groups
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www.pdsa.org The Platelet Disorder Support Association USA, was patient-founded in 1998 to educate and empower those with immune thrombocytopenia and other platelet disorders. Today, PDSA is a powerful force serving and unifying the global ITP community of patients, practitioners, caregivers, advocates and key disease stakeholders.
itpaustralia.org.au ITP Australia – information for Aussies about ITP
The Patients’ Association is a UK healthcare charity which for nearly 50 years has advocated for better access to accurate and independent information for patients and the public. It helps thousands of patients and relatives every year, answering concerns and queries about any aspect of the healthcare system.
Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them.
Contact a family is a national UK charity that exists to offer advice and support to families with disabled or sick children.
Rathbone is a youth charity helping all young people to get trained and into work, including those with disabilities or special needs.
Funny Blood A UK group raising awareness of platelet function disorders.
Carers UK is a national charity led by carers who offer expert support and advice to those caring for a loved one.
AARDA is the American Autoimmune and Rare Disease Association, of which there is no UK equivalent at present. It gives a list of autoimmune illnesses which may be
useful for ITP patients who suspect they have a second or even third autoimmune disease running concurrently with their ITP.
The DAISY Foundation a US organisation founded in memory of an ITP patient to award nurses for exceptional care and compassion.
Government or official
NHS Direct Online and the NHS Evidence Health Information Resources website (formerly the National Library for Health)
UK Department of Health homepage.
BPL. Bio Products Laboratory BPL is a not-for-profit organisation, wholly owned by the British Government. The National Blood Authority (NBA) has overall responsibility for BPL, the Blood Centres in England and Wales and the International Blood Group Reference Laboratory (IBGRL). The NBA, BPL, IBGRL and the Blood Centres are collectively known as the National Blood Service (NBS). The NBA is directly responsible to the NHS and Department of Health.
PubMed, a service of the National Library of Medicine, includes over 15 million citations for biomedical articles back to the 1950’s. These citations are from MEDLINE and additional life science journals.
OMNI offers free access to a searchable catalogue of hand-selected and evaluated, quality Internet resources in Health and Medicine. New resources are added to the database on a weekly basis.
Care Quality Commission. The CQC checks all hospitals in England to ensure they are meeting national standards, and theyshare theirfindings with the public. You can also share your experience of a hospital.