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.
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.
| 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.