Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

Waldenstrom's Macroglobulinemia Doctor-Patient summit

Posted by

Just wanted to bring the WMUK charity and this years Doctor- Patient summit to the attention of fellow WMers out there.

The summit is on 1st July in London. It gives a chance for WMers to meet doctors invovled in the treatment and research of this rare cancer. 

It's an opportunity to gain information about current treatment options and to hear about the advances in research and possible new treatments. Full details are on the WMUK website.

WMUK is a charity which is working for us, we need to support it as WM is a rare condition. We can not just sit back and wait for something to happen.

I have taken the liberty of taking a small piece from their website which explains part of what they do far better than I can.

We are the UK's only charity focusing on support for patients, carers, doctors and nurses involved in the treatment of Waldenström's Macroglobulinemia (WM). WMUK is a unique not for profit organisation, also a registered charity, developed jointly to bring WM patients and medical professionals closer together to improve the treatment of WM. It was originally set up to deliver an annual WMUK doctor/ patient forum in London. We have a medical board of leading doctors treating WM in the UK (see below) together with patient representatives. Many of the doctors are involved in updating the treatment guidelines for the disease, undertake research  and attend wm conferences.

Apart from providing a point of contact, WMUK is also involved in patient advocacy at UK and EU level. It works closely with the IWMF, based in Sarasota, Florida and the European WM Network.  In common with many other rare diseases, the current economic climate of budget cuts and reconfiguration of the NHS may mean the small numbers of patients, and relatively expensive and specialised  treatment that WM patients need, may put advanced treatments under threat.

This will be the first time I’ll be going to the summit after being diagnosed 2 years ago and having recently completed treatment. I'm looking forward to meeting up with fellow WMers as sometimes it can feel awful lonely!


Posted by

Good on you Ann and a full report will follow ;)

Posted by

Ha, ha, I’ll give it a go!

Posted by

Dear Ann,

Thank you for highlighting this. I might go also.

Take care, 

Finding my way in the dark... x

Posted by

That would be good, the more the merrier.

Posted by

Sadly, I can't make it to the Summit but am hoping there will be some online reports that I can catch up with after the event.