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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 Immune Thrombocytopenia (Idiopathic Thrombocytopenic Purpura) by providing:

  • Patient/parental/antenatal information and support
  • "Listening ear" contact with nominated volunteers
  • An information pack
  • A quarterly journal, The Platelet
  • Easy to read booklets and factsheets on ITP and associated interests
  • Advice on referrals for difficult or refractory cases
  • Guidelines for schools
  • Protocol for dentists of affected patients
  • Annual conventions featuring leading ITP specialists.
  • Internet forums, Facebook etc.

The ITP Support Association is a wholly independent UK organisation and registered charity giving support and information for 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. (We do not fund research that involves any testing on animals)
  • 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 Team. See list here

Trustees. See list here

Medical Advisors See list here

Website Policy See here

Membership distribution

Accounts as posted on the Charity Commission website

Funding from the pharmaceutical industry. More here


History of the Association

The ITP Support Association was formed in 1995 by Shirley Watson after her son developed ITP, as at the time there was no dedicated ITP patient group anywhere in the world! In these pre-internet days, initially the group was established to help those addressing the constraints of the condition by creating a telephone contact network since the rarity of the disease often creates an acute sense of isolation, with ITP patients seldom meeting one another. There were no patient friendly publications on ITP at this time so Shirley and fellow trustee Keith Lewis set about writing publications especially written in lay terminology for ITP patients with the help of Professors Adrian Newland and John Lilleyman. Since then appropriate information has also been made available for doctors, dentists and schools and the contact network has been superseded by nominated volunteers with counselling experience. As the only UK charity for this disorder the Association has been in touch with nearly 5000 UK ITP sufferers to date, and has members in every continent. 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. In 2004 the charity held its first Medical Seminar for health professionals which was attended by 104 haematologists and paediatricians.

Clinicians in the UK and USA give the Association much encouragement and assistance. Its 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 with contributions by patients and health professionals. From the outset two specialists in America, Professor James George and Professor George Buchanan, contributed regular articles to provide an American perspective on ITP interests, and this important column continues today with a team of three, Professors James George, Spero Cataland, and Dr Cindy Neunert.

By 2008 other ITP patient groups had been established in America and Europe, and The ITP Support Association arranged the first ever meeting of group leaders from Denmark, Sweden, Germany and Holland, with sponsorship from GlaxoSmithKline. Occasional meetings (with additional funding from Amgen and the DAISY Foundation) have followed and with some including representatives from tthe USA and Finland.

In 2011 the Association held a reception at The House of Commons to mark its participation in the September ITP Awareness Campaign which had been initiated the previous year by the US group, the Platelet Disorder Support Association. The ITP Support Association used this opportunity to invite 16 leading ITP haematologists and paediatricians to a meeting that would result in the creation of ITP centres of excellence. These ITP Clinical Centres, now numbering 24, are spread around the UK with adult, paediatric or joint ITP clinics, giving every ITP patient the opportunity to get a referral to an expert team if they wish. Additionally, pharmaceutical companies seeking patients to participate in clinical trials for new drugs can now easily identify hospitals with a special interest in ITP.

The Association was initially run by volunteers from their own homes but as the administrative burden has increased, two paid part-time assistants have joined the team, working 10 hours a week between them. The Association's headquarters was based in an extremely small brick outhouse at the founder's home, but after 20 years the charity had expanded to a point where it desperately needed an independent and spacious office. The Association managed to purchase a plot of land to erect its own purpose built office suite, which was opened in 2015 and is known as The Platelet Mission.


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.


 

 

 

 

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