Neil Dudgeon on Pointless Celebrities

A big thank you to friend of the ITP Support Association Neil Dudgeon, who with partner Annette Badland reached the final only to miss out on the jackpot by 1 point. Neil dedicated his £250 winnings to the ITP Support Association.

 

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.

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BMA Foundation for Medical Research – grant winners 2017

Three of the UK's leading ITP specialists, have received grants from the BMA Jon Moulton Award to further their research into ITP. Dr Nichola Cooper, Dr Charlotte Bradbury and Dr Quentin Hill, all three directors of ITP Clinical Centres. Details of the award can be found via this link, BMA Foundation once on the page click on the J Moulton tab.

As part of the Care and Support Alliance, the Patients Association has launched a petition to ensure the Government to bring forward their proposals to fix the social care system so it helps all those that need it.


Right now, over one million disabled and older people are left to struggle each day without the support they need. This includes very basic support such as help to get out of bed, wash, and eat. The numbers of people needing help have gone up by 50% in the past seven years and are only going to get larger.


We need 100,000 signatures on our petition to get the Government to act and publish their proposals to give people the basic support they need, which includes meaningful consultation with those who need care

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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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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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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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.

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