We are pleased to announce that in association with Novartis, we will be holding an ITP Patient Day at the Ashling Hotel, Dublin on 13th April 2019.

The agenda for the Dublin ITP Patient Day promises to cover a range of ITP topics, we can confirm the attendance of the following Healthcare Professionals, Dr. Gerard Crotty, Haematologist and Health Service Executive, Prof. Adrian Newland CBE, Professor of Haematology and Nichola Harten, Clinical Nurse Specialist. 

If you would like to attend, please reserve your free space by clicking on the link below and completing the online booking form.

For more information and booking details please click here

The March 2019 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.

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Speakers Presentation Slides from the 2018 ITP Support Association Convention

The Speakers Presentation slides from the recent ITP Support Annual Convention (held in Chester) are now availbale to view. All slides are in PDF format.

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ITP Convention 2018 - Roundup

We recently held our Annual ITP Patients Convention, this time, following requests from members we took the Convention to the beautiful City of Chester and its historic racecourse in the North West of the Country.

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ITP International Global Meeting1

Speakers Presentation Slides from the 2018 ITP International Global Alliance Meeting

The 2018 ITP International Global Alliance meeting was hosted by the ITP Support Association UK and organised by the ITP Support Assocation (United Kingdom) and the Platelet Disorder Support Association (USA), the meeting was held in Chester.

Speakers presetnation slides will be posted here as they become availbale. All slides are in PDF format. The Presentation Slides are the copyright of the individual speakers, the slides are for viewing only, copying and printing is restricted.

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First Local ITP Group Meeting in Devon

We recently held the first Local ITP Group Meeting of the year. The meeting was held in the Ancient Stannary Town of Ashburton in the heart of the South Devon countryside, close to the edge of Dartmoor. We must say a big thankyou to member of the ITP Support Association, Sally Rhodes, who stepped forward and volunteered to organise a suitable venue for the meeting.

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ITP Support Association Local Group Meetings

 

 

 

 

We are in the process of rolling out Local ITP Group Meetings around the country. These local groups are an opportunity for ITP patients, their family and friends to meet in an informal setting over a cup of tea/coffee and an opportunity to chat and talk about each other’s experiences with ITP.

If you would be interested in volunteering to help organise an ITP Local Group Meeting in your area please email This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Bedfordshire ITP Local Group Meeting

Next Meeting: Thursday 28th March 11:00am start

Venue: The Platelet Mission, Kimbolton Road, Bolnhurst, MK44 2EL

Limited parking is available at the Mission, if this is full then you can park on the road.

 

Cheshire ITP Local Group Meeting

Next Meeting: Friday 5th April 11:00am to 13:30pm De Trafford Arms in Alderley Edge

Venue: De Trafford Arms in Alderley Edge

 

Devon ITP Local Group Meeting

Next Meeting: Friday 29th March 7:15pm start

Venue: St Andrews Church Hall,Ashburton, TQ13 7DD.

Limited parking is available at the hall, if this is full then you can park on the forecourt of the residential home next door (St Andrews House).

 

Edinburgh

Next Meeting: TBA

Venue: TBA

 

Sussex ITP Local Group Meeting

Next Meeting: 18th May 10:30am to 12:30pm

Venue: St Pauls Church Hall, St Pauls Church, Churchside, Chichester, West Sussex, PO19 6FT

 

 Legal Disclaimer: The information discussed at these local group meetings It is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. You must contact your doctor who knows you and your medical history for more specific information and advice based on your individual circumstances. No liability whatsoever is accepted by the ITP Support Association, its staff, volunteers or medical advisors.

 

 

 

 

 

Putting people with inherited and acquired bleeding disorders at the heart of multidisciplinary research. The official Top 10 research priorities:

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ITP Clinical Centre Survey Results

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.

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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.

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Derek Elston, trustee of the ITP Support Association, tells PharmaTimes about his experiences of being diagnosed and living with the rare bleeding disorder

How were you diagnosed with idiopathic thrombocytopenic purpura and what were your symptoms?

I was first diagnosed in 1993 with ITP after working in the Far East for 14 months. At the end I was fairly shattered both with the intensity of the work and commuting regularly. After about four weeks, I decided to visit the doctor. He took a sample of blood.

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