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.

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.

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.

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.

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.

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,

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.

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.