ITP Support Association Convention 2018

Following last year’s well-received ITP Convention in London, several members approached us with a request that we should once again consider holding a future event in the North West of the country. Therefore, we are pleased to announce that our 2018 Convention will take place at Chester Race Course on Sat 27th October from 10.00 am to 5.00 pm.

Read more ...

The June edition of the Platelet is now available to download from the members area of the website, if you have not yet joined the ITP Support Association click here.

The June Platelet is a bumper edition (32 pages) including all the usual favourites, latest fundraising heroes, updates from the ITP office, the American Perspective, plus a report on the recent patient day held in Cardiff and news about our ITP Patient Afternoon at the Platelet Mission in July.

To read this and previous editions of the Platelet go to the members area of the website.

 

Make Urine Testing Safe for Patients and Save the NHS Millions - Introduce A Protocol

Providing a urine sample may not be everyone’s idea of a conversation topic but it’s a conversation that must be had.

Every year over 65 million urine samples - clinically also referred to as specimens - are requested by doctors and healthcare professionals in the UK so that health conditions can be correctly diagnosed and treated.   That’s roughly equivalent to one sample for every member of the UK population. 

Please sign this petition, the link will take you to Change.org

https://www.change.org/p/the-rt-hon-jeremy-hunt-mp-make-urine-samples-trustworthy

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. We are pleased to announce that following the initial survey, all the questions submitted have been collated and simplified and are now contained in a final survey which is live at www.stopthebleeding.org.uk

Read more ...

Vacancy Book Keeper  / Treasurer

The ITP Support Association is seeking a Book Keeper / Treasurer whose duties will be to:

  • monitor the financial administration of the charity and report to the Chief Executive.
  • oversee the charity’s financial risk-management process;
  • act as a countersignatory on cheques and online banking;
Read more ...

Lexy Monks and friends

Back in October 2017, Lexy Monks and friends ran in the Manchester 10km Rough Runner to raise money for the ITP Support Association (Lexy's Mum has ITP). The run coincided with Storm Brian hitting the UK, hence the rather muddy conditions in the photograph. Despite the weather Lexy and friends completed the course and smashed their fundraising target (£150) by raising an incredable £485.20. Well done Lexy and Friends.

A new data protection law is being introduced later this year in the United Kingdom. Therefore we are publishing a new Privacy Notice to show how we use and protect your information and anyone who is connected with The ITP Support Association. In addition everyone who joined the ITP Support Association online or renewed their membership online, there are additional options to chose regarding how we contact you within your membership profile.

Read more ...

ITP Pocket Log

We are pleased to announce that the Android version of the app is live! It is available to download – free of charge – from Google Play, use the search term “ITP symptom tracker”.

The IOS version has been available for some time from the Apple App Store. 

Everyone involved in the project would like to thank those who sent in ideas for the app after the outline of the project was shared at the ITP Convention last year.

Read more ...

The 20th ITP Convention 2017

Royal Society of Medicine, London.

The 13th is considered by many to be an unlucky number so I am sure, some had misgivings about the date chosen for the annual convention for 2017. They need not have worried.

Read more ...

Join us

What are the benefits of membership?
Membership of the ITP Support Association mailing list brings you:

The Platelet, our quarterly journal, access to our 'ITP Friends' counselling volunteers, further information on living with ITP, treatment and the latest research, through our numerous free booklets and factsheets covering items such as insurance and Schools, a free ICH alert card in case of a bleeding emergency, access (through the Association) to our medical advisors for difficult conditions, concession ticket price for the annual ITP Support Association Conventions featuring visiting ITP specialists, and the opportunity to voice your opinion in occasional optional surveys to gather data on ITP (some from pharma agencies offer payment to participants).

Read more ...

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

Read More

What does ITP stand for?

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) .

Read more ...