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The ITP Support Association was instrumental in bringing together leading ITP clinicians in Sept 2011 for the purpose of establishing a network of recognised ITP centres of excellence around the UK. In the six years that have followed, many patients have requested referrals to these ITP Clinical Centres, and the Centre Directors are running a very active ITP Forum which coordinates their expertise to encourage better management, research and clinical trials. 

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EUROPEAN HAEMATOLOGY ASSOCIATION

ANNUAL CONFERENCE

MADRID JUNE 22nd – 25th 2017

Derek Elston (Trustee,) EHA Patient Advocate Workgroup Member

Near forty degrees of heat is not the most desirable temperature in which to attend any conference, but thank goodness, the heat in Spain is somewhat dryer than here in the UK and the conference centre was air conditioned.

The conference was held at the IFEMA conference centre located on the outskirts of Madrid approx. 5 mins from the international airport.

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The June issue of the Platelet is now available for members.

It is now even easier to join the ITP Support Association,  our members include not only people with ITP but also the family and friends of those with ITP. To become a member of the ITP Support Association click this link Join.

We currently send out a hard copy of the Platelet each quarter to our members, however, in order to keep costs down, we are giving members the option of digital only. If you would prefer to opt for digital only please email your details to This email address is being protected from spambots. You need JavaScript enabled to view it.

Plasma Protein Therapeutics Association

14-15th March 2017 Prague.

The Annual Meeting of this important association presented their 2 day conference covering the latest information relative to the extraction and purification of blood extracts for safe use by patients. The conference was attended by many physicians concerned with the treatment of rare diseases for which plasma products are so vital.

In his annual report to the conference, the chairman emphasised the problems of supplies encountered in various parts of the world and how they were tackling the problems. He also reported on the strategic goal to ensure the availability of safe, high quality plasma for fractionation. A further goal is the elimination of trade barriers and other discriminatory practices to achieve open access to plasma protein therapeutics globally.

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Don't forget – SEPTEMBER IS ITP AWARENESS MONTH!

 

Please help our campaign to increase awareness of ITP

  • To increase awareness about the symptoms and to stress the importance of seeking medical advice and diagnostic tests for adults and children suffering from unexplained bruising and/or bleeding.
  • To increase awareness in schools so that parents of children with ITP bruising are not subjected to accusions or suspicion of physical abuse.  
  • To increase awareness amongst health professionals (GPs , paramedics, A&E staff, midwives, dentists etc) so that adults and children with ITP, or those who have lost their spleen through ITP, receive the appropriate medical care.
  • To increase public awareness through fundraising events to raise money for much needed ITP research which (unlike some better known diseases) receives no state funding. 
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Some of the world’s largest research funders and NGOs today agreed to adopt the WHO’s strong standards on clinical trial transparency. This means all clinical trials they fund or support will be registered and the results reported.

In a joint statement, nine major funders including Médecins Sans Frontières, the Bill & Melinda Gates Foundation, the Indian Council of Medical Research, the Norwegian Research Council, the UK Medical Research Council and the Wellcome Trust committed to develop and implement policies that require all trials they fund, co-fund, sponsor or support to be registered in a publicly-available register. They also agreed that all trial results would be disclosed within specified timeframes on the register or by publication in a scientific journal.

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ITP Pocket Log

Many of you will use smart phones or tablet devices as part of everyday life so this item will be of interest.

At the recent ITP Convention at the Royal Society of Medicine in London there was a short presentation on a potentially exciting piece of technology called ‘ITP Pocket Log’. This application (App), which will be available on both IOS and Android will allow users to keep track of their ITP symptoms, test results, medications plus much more.

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