This is a llnk to the MPN Reseach Foundation website
Its going from strength to strength, and is supported by all our favourite clinicians and researchers - Claire Harrison, Reuben Mesa et al.
It has explanations of the various mpns, and up to date info on treatments and links to clinical trials. Because the MPN research world is co operative and international , most of the trials are multi centre and multi country, so even tho the site is run by an organisation based in Chicago ( a much understated city imho, cultural attractions as good as NY and the locals are soooo friendly and welcoming. ) its well worth while clicking on for all of us who live in Europe too.
They have started an MPN registry so that we can, if we want , input our symptoms and health indicators over time. It’ll build up into an invaluable resource . The more people who join the better. You have full control over who gets to,use the data.
Although for sheer good sense and support this forum here is the place to go to for patient to patient help.
i’m about to switch hospitals from a London hospital to one in Oxford, as the travelling is easier.
All the best
Rachel ( PMF, inter 2)