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.

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.

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.

Downloads for UK hospitals

The Association provides a Patient Leaflet and A4 Size Poster which can be downloaded using the links below.

ITP Patient Leaflet	A4 poster giving contact information

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.

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. 

EUROPEAN HAEMATOLOGY ASSOCIATION

ANNUAL CONFERENCE

MADRID JUNE 22^nd – 25^th 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.

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.