HAIRBEAR_UKFounder Admin11 years ago

WM support groups rareconnect.org/en/communit... (may be worth forwarding on to some of these?) Being so rare WM communities are not as active as our own.

I am just back from London and a very interesting day shared with other HU communities. Where we received a demo of the new platform and spent a little workshop time together. (I will write a summary tomorrow that highlights new developments that will greatly improve the site). This could all go live next month.

Chris your WM information post was timely for me, for it became clear today that there are many communities offering support on the HU platform for many conditions that CLL people may also be living with. Even if the conditions are not connected, the support is still beneficial. I thought I would flag the link to these groups. How often could a known comorbidity impact on CLL and could we benefit from the experience and support from other communities? I know for a while I lost sight of the ball as CLL was the focus during cardiac issues. I did benefit from support with this and it has aided me in better living with CLL.

I was struck today by how much in common we have with many in the chronic category and was intrigued listening to those representing autoimmune conditions as an example.

HU provides a platform to a very varied and extensive range of support communities. healthunlocked.com/directory/ I was struck by how many

CllcanadaTop Poster CURE Hero11 years ago

That's a great post Nick...Thanks!

I have known one patient with WM and then CLL sequentially, a two patients with WM and CLL running in parallel.

1500 WM patients diagnosed in the U.S. each year...is only topped, by my favourite bunch of Richter's people... 500 transformations a year... !