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.

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

14-15^th 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.

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. The venue was exceptional, and the speakers, with the exception of one esteemed gastroenterologist, were all eminent haematologists from the UK, USA and Canada considered to be the whose who in ITP internationally. This year also proved to be the second most attended convention with an increase of over 50% on last year’s attendance. The total attendance was around 150 which was the full capacity of the Max Raine Lecture Theatre at the Royal Society of Medicine. Not only that, over half of the delegates attending were there for the first time to listen and learn. This I hope, they certainly did.

Less than a month now until September ITP Awareness. The following link gives us all a few ideas on how we can spread awareness about our enigmatic condition. If we can all do a little it adds up to a lot.ITP SEPTEMBER AWARENESS MONTH - ITP Support Association | HealthUnlocked

September is ITP Awareness month and you can find out how to help spread the word about ITP by checking out the following link....http://globalitp.org

healthunlocked.com|By HealthUnlocked

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.

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.

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.