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Useful Links
This list contains links 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 to trust what you may find on these sites.Support groups
Contact A Family. Helping families who care for children with any disability or special needs. On line directory of Specific Conditions and Rare Disorders.
American ITP support website. itppeople.com
An on-line directory at www.ukselfhelp.info provides the telephone numbers of over 760 UK Self Help Groups and hyperlinks to over 560 web sites.
Quackwatch, an organisation that highlights the less reliable aspects of medical treatment. They have just one article that mentions ITP, it is about a court case and MMR vaccination.
The DAISY Foundation. DAISY is an acronym for Diseases Attacking the Immune System
Sites by governments, hospitals or individual doctors
Guidelines from the British Committee for Standards in HaematologyUK ITP Registry. Set up to assist haematologists who want to take part in the Adult ITP & Familial ITP registries, as well as providing additional information which will be of interest to patients with ITP. Royal London Hospital
UK Paediatric Chronic ITP Registry ITP Support Association The UK Paediatric chronic ITP registry is a multi-centre study designed to collect prospective data on all new cases of childhood immune thrombocytopenic purpura (ITP)
UK Department of Health homepage, the UK National Health Service homepage
NHS Direct Online and the National Electronic Library for Health
The British Paediatric Surveillance Unit part of the Royal College of Paediatrics and Child Health.
James George M.D. Member of the ITP Support Association Advisory Panel. Chief Professor of Medicine, Hematology/Oncology Section, University Of Oklahoma. See also Medical Advisors page.
Dr. George Buchanan is Medical Director of the Center for Cancer and Blood disorders at Children’s Medical Center of Dallas. A full time faculty member at the University of Texas Southwestern Medical Center at Dallas (UT Southwestern), he is Professor of Pediatrics, Director of the Division of Pediatric Hematology/Oncology, and recipient of the Children’s Cancer Fund Distinguished Chair in Pediatric Oncology and Hematology.
Dr Robert McMillan M.D. is an ITP Specialist at the Division of Hematology/Oncology at the Scripps Clinic & Research Foundation USA.
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.
Online Mendelian Inheritance in Man, OMIM. A catalog of human genes and genetic disorders. This webpage gives some ITP related genetic information if you search for ITP. Although ITP is not hereditary, the extremely rare condition of Familial ITP is and this website gives some information on this genetic aspect of ITP.
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.
Medical Encyclopedia by the U.S. National Library of Medicine
Health Topics at the U.S. National Library of Medicine
A list of U.S. National Institutes of Health, a site that contains many searchable databases.
Dr Mehdi Khellaf, working with Pr Godeau at the University Mondor hospital near Paris in France. A French national reference centre for ITP in Adults.
Daisy Award for Extraordinary Nurses
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http://www.daisyfoundation.org The Daisy Award for Extraordinary Nurses |
Charity Sites
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www.charityflowers.co.uk
By choosing Charity Flowers Direct you will be giving more than just
beautiful flowers to the fortunate recipient. You will also be able
to help the ITP Support Association. Charity Flowers Direct is the
UK’s only flowers by post service to be owned by a major national
charity, Age Concern, and is run for the benefit of charities. 100%
of profits go to charity (15% of the retail price) and yet Charity
Flowers are competitively priced with bouquets starting from £10.99. Flowers are sent by first class post in a presentation box with a cut flower care leaflet and your own personalised message. (Don't forget to quote ITP to support the ITP Support Association |
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Secure Online Giving with Charity Card For subscribers to the Charity Card scheme. |
Commercial and non governmental sites
GSK have annouced that "Pivotal phase III trial showed RevoladeTM (eltrombopag) raised platelet counts and reduced bleeding in patients with chronic ITP. See their press release here.
www.Netdoctor.co.uk. This site has a useful Medicines page which gives information on drugs -how they work, what they are used for, warnings and cautions, side effects and their effect on other medicines.
Baxter Healthcare's ITP site itpinfo.co.uk. This link is to the website of a drug company marketing Anti-D as a treatment for ITP, and as such we can not guarantee its impartiality or take any responsibility for the content. A comprehensive listing of UK resources at healthcentre.org.uk
The Plasma Protein Therapeutics Association (PPTA) is the primary advocate for the world's leading producers of plasma-based and recombinant biological therapeutics. The medicines produced by PPTA members are used in treating life-threatening diseases and serious medical conditions including bleeding disorders, immune system deficiencies, burns and shock.
Search a database of rare diseases at National Organization for Rare Disorders
Information from eMedicine.com, a privately held US based company.
Travel insurance for those with known medical conditions. World First, arranged by Rothwell and Towler.