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Last year many of you may recall that a group of rare disease stakeholders came together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of Bleeding Disorders. Some people experience problems with bleeding throughout their lives as the result of an inherited disorder such as haemophilia or von Willebrand disease. Others may have long-term problems due to an acquired problem such as immune thrombocytopenia and finally some people may have experienced problems only after childbirth or surgery. To this end the PSP launched a survey 12 months ago asking for people to consider which questions they think are the most important for researchers to be asking.
Please be aware that from 1st April 2018 each prescription item price increased by 20p to £8.80. The prepayment certificate prices will remain the same price at £29.10 for 3 months and £104 for 12 months.
For further information please visit the Government website at:
In late 2017 we invited patients who attended the various ITP Clinical Centres around the country to complete a short patient satisfaction survey. We wanted to assertain the patients perception of how the centres were performing.
The responses to the questions showed that, overall the centre were performing to a high standard. Although the on-line survey closed in February we continued to receive paper surveys until the end of April with 245 surveys being recieved overall.
A new data protection law (GDPR) has now been introduced in the United Kingdom. Therefore we have published a new Privacy Notice to show how we use and protect your information. When joining or renewing your membership of the ITP Support Association online there are additional options to chose regarding how we contact you within your membership profile.
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.
Immune Thrombocytopenia (An autoimmune disorder (Immune) causing a shortage of small cells in the blood known as platelets (Thrombocytopenic) Formerly known as Idiopathic (of unknown origin) Thrombocytopenic Purpura (bruising) .
What is ITP Immune thrombocytopenia (formerly known as idiopathic thrombocytopenic purpura) is a medical term for an autoimmune disorder (immune) causing a shortage of platelets (thrombocytopenia) and bruising (purpura).
ITP Research funded or supported by the Association
There is no state funding for ITP research, nor does The ITP Support Association receive any government funding, so it is entirely due to the generous donations and fundraising efforts of people with an interest in ITP that such valuable and much-needed research, as listed below, has been carried out.