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About the ITP Support Association

Charity Registration No. 1064480

The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Idiopathic Thrombocytopenic Purpura by providing:

• Patient/parental/antenatal helpline support
• A telephone contact and e-mail network with other sufferers/parents
• An information pack
• Quarterly newsletter
• Easy to read booklets and factsheets on ITP and associated interests
• Advice on referrals
• Guidelines for schools
• Protocol for dentists of affected patients
• Guidelines on management of ITP for paediatricians
• Annual conventions featuring leading ITP specialists. Past Conventions
• CDs of lectures by ITP specialists

The ITP Support Association is a wholly independent UK organisation and registered charity giving support and impartial advice to patients with ITP. Click here to join us.

We work with the medical profession in order to advance the knowledge and treatment of ITP by:-

• Funding research into ITP
• Occasional funding of salaries to pilot a new ITP project (eg. funding ITP nurse, registery co-ordinator, research scientist)
• Running occasional surveys and collating information
• Providing feedback on patient concerns to specialists and drug companies
• Medical seminars for haematologists, paediatricians and other health professionals

We are funded mainly by donations and the fundraising activities of volunteers and friends of the Association. We also receive sponsorship from companies involved in research and the treatment of ITP.

The ITP Support Association Volunteers See list here

Medical Advisors See list here

History of the Association

The ITP Support Association was formed in 1995 by Shirley Watson (whose son has ITP) to help those addressing the constraints of the condition. As the only UK charity for this disorder the Association has been in touch with nearly 4000 UK ITP sufferers to date, and has members in every continent. Initially, Support Association publications were aimed at ITP patients, but now appropriate information is also available for doctors, dentists and schools. A telephone network of sufferers, e-pals provides support and encouragement to those who need it, since the rarity of the disease often creates an acute sense of isolation, with ITP patients seldom meeting one another.

The Association was granted charity status in 1997 and in April 1998 held its first National Convention. Attended by nearly 150 people associated with ITP from the UK mainland and Ireland, either as clinician, patient or family supporter, the event proved to be an historic occasion. This was the first such pertaining to ITP nationally and even, it is thought, internationally. Subsequent annual conventions for patients and medical seminars for health professionals have attracted internationally renowned specialists to speak to a packed auditorium on various aspects of ITP.

Clinicians in the UK and USA give the Association much encouragement and assistance. Its seven eminent medical advisors are professionally recognised as foremost experts in the field of ITP, specialising in the treatment of the most difficult cases of adults, children and pregnant women with the disorder. The first edition of our quarterly newsletter, The Platelet was published in June 1996 and is described as a lifeline by many of its readers. It provides the latest news about ITP related matters and includes answers by medical advisors Professor Adrian Newland and Dr. John Grainger to reader's questions, and a column from Dr. Drew Provan giving and update from the UK's leading ITP hospital, The Royal London. In addition, two leading specialists in America, Professor James George and Professor George Buchanan, contribute regular articles to provide an American perspective on ITP interests.

Every penny donated is used for the benefit of ITP sufferers, not for salaries of administrators or fundraisers, nor in costs of office premises. Run entirely by volunteers from their own homes, the Association charges no membership fee.

This website has been designed to work with as many web browsers as possible by coding with standard html. If you have any technical problems with this site, please contact web.admin@itpsupport.org.uk. Although every effort is made to ensure that the information given on this website is correct and up to date, the Association cannot be held responsible for errors or omissions. Association personnel are not able to give clinical advice, please contact your personal clinician.