MPN Horizons 2017 registration is now open

We are looking forward to the 2nd MPN Horizons Conference, to be held in Frankfurt, Germany on 27-29 October 2017.

The main goal of the MPN Horizons 2017 conference is to build capacity in patient advocates in MPN, to educate them in growing their skills and knowledge how to work locally with their patient groups, in good governance, in disease-specific topics as well as improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.

Registration is now open for leaders of MPN patient organizations. For more information and registration visit:

MPN Horizons 2017 starts on Friday, 27 October 2017 at 11:00 with an introductory “MPN 101” session followed by the official opening session at 13:30. The conference ends on Sunday, 29 October 2017 with a farewell lunch from 13:00-14:00, followed by a city tour for those staying over.

The programme features world-renowned experts in MPN and patient advocacy.

We are excited to meet you all in fabulous Frankfurt!

 

MPN Horizons brings together the global MPN Community

The first global conference for MPN Patient Advocates was held from November 11th – 13th 2016 in Belgrade, Serbia. Patient advocates attended from Australia, Azerbaijan, Belgium, Brazil, Canada, Chile, Denmark, Finland,  Germany, Hungary, Israel, Italy, Japan, the Netherlands, Norway, Poland, Serbia, Spain, Slovakia, Slovenia, Sweden,  Switzerland, the UK and the USA.

The event consisted of over 20 talks, covering updates on MPN Research, current and emerging therapies, symptom management and a variety of advocacy and support topics. Read more about the conference.

December 20, 2016MPNNews

MPN Advocates Network expands

Having been founded by patient representatives from the Netherlands, Spain and the UK, the network now has representation from countries all over the world:

Organisations that have recently joined are: Flute of Light in Israel, the Canadian MPN Network, the MPN Research Foundation based in the US, ALTE-SMP in France, mpn-netzwerk in Germany, AIL in Italy and new groups from Begium and Switzerland.

If you represent MPN patients and agree with our goal to establish international collaboration, please contact us to become member. See our members page.

July 30, 2016MPNNews

| UPDATES FROM THE ASH 2013 MEETING |

Over 20,000 haematologists, scientists and trainees gathered for this year’s ASH meeting in New Orleans despite the ice storms that gripped America at this time the meeting was an invigorating and stimulating as ever..

A new gene for MPN – CALRETICULIN

The research was published in December 2013, in the New England Journal of Medicine.

In 2005 scientists identified abnormalities in the JAK2 gene in patients with MPDs. Since the discovery, blood testing for JAK2 has become a routine part of the diagnostic work up of patients with suspected MPDs. However, whilst the vast majority of patients with polycythaemia vera are positive for the JAK2 test and can be readily diagnosed, only about half of patients with essential thrombocythaemia or myelofibrosis have a positive test. Diagnosing these patients is currently time consuming and requires multiple, often invasive tests, such as a bone marrow biopsy.

In a recent study led by Professor Tony Green from the University of Cambridge, and a separate study from Professor Robert Kralovics from Vienna, researchers identifed a new gene called CALR that was found to be abnormal in 40% of MPD patients. In particular, this was found in the majority of patients with essential thrombocythaemia or myelofibrosis that were negative for the JAK2 test.

Read more →

April 18, 2014MPNNews