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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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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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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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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Priority Setting Partnership (PSP)

Answering questions about Bleeding Disorders

A group of rare disease stakeholders have come 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. We are interested in all these problems.

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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.

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New appointment at the Royal London

Dr Tom Butler, Haematology Clinical Lead issued the following:

As you all know, Drew Provan retired at the end of August and we have been working hard to recruit a new consultant to take on the medical  leadership of our internationally renowned immunohaematology research and clinical centre.

I am really pleased to be able to announce that we have now appointed Dr Vickie McDonald to this role, she will formally start with us late July/early August but is already collaborating with us on various projects. She brings a wealth of clinical and research experience in immune platelet disorders. She has been a consultant at Guys & St Thomas’ NHS Trust for a number of years,

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Sponsorship opportunity

Many of you have been using our new website, if you have yet to visit then go to www.itpsupport.org.uk.

The launch of our new website also provides a fantastic opportunity; we are looking for people or companies to sponsor the new website. By becoming a sponsor you would see your name or company name and logo on the whole site or individual sections, depending on the level of sponsorship.

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Government announces plans to implement the UK Strategy for Rare Diseases with NHS England

Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan for the commitments outlined in the UK Strategy for Rare Diseases that it can influence by the end of the year. For those commitments that are outside of the scope of NHS England, the Department of Health will support its arm’s length bodies to coordinate plans for implementation.

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Birmingham Childrens Hospital rated outstanding

Birmingham Children's Hospital has become the first of its kind in the country to be rated outstanding by the health watchdog, The hospital which is also one of our ITP Clinical Centres tweeted: "We're proud to be the first children's hospital in the country to be rated 'outstanding' by @CareQualityComm. #ByYourSide".

You can read the CQC report here http://www.cqc.org.uk/location/RQ301

Holiday Arrangements Summary

Before you go:

  • Order the ITP Support Association's Holiday insurance and Travel Guide, which includes advice on insurance, flying, avoiding malaria, medicines and vaccinations, It also includes insurance companies recommended by our members.  
  • If travelling to Europe get a European Health Insurance Card (EHIC) to entitle you to free or discounted healthcare in European countries.
  • Discuss any required vaccinations with your doctor well in advance, bearing in mind that they are not effective within 3 months of certain drugs.
  • Order medication well in advance, ensuring you have enough to last the holiday. Inform your holiday insurance company about your ITP, or you may find you are not covered in the event of a claim (they may require a doctor’s letter).
  • Try to find out what ITP is called in the country you are going to, in case of an emergency. You may be able to obtain this from the country’s embassy.
  • Find out what the equivalent of 999 is in the country you are visiting.
  • Find out the locality of the doctor and hospital nearest to your accommodation.

Make copies of all important documents, such as passports, and leave the copies with a friend of relative. You may need the copy if your originals get stolen.

If you take prescribed medicine, take a copy of your prescription and doctor’s letter. 

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