CLL Support Association

Why Patients Need to Be Heard At Medical Congresses

Hi friends,

I have just posted on my blog - - the first of a series of monologues on why the patients' voice needs to part of every professional meeting, but that is just a small piece of a large plan to inform and support my fellow patients.

Please help by visiting my blog

Off to ASH tomorrow.

Thanks to those who suggested questions. Not too late to ask for more .

Thanks for your help.

Stay strong. We are all in this together.


2 Replies

Hi Brian thanks for your post, [retrospective Admin] The direct link to your survey has been removed to enable members to read about your plans and what it is about from your blog before committing to it.

i have had a go on your survey

One thing I have noticed is you cannot move back and revisit your answers I made a mistake and clicked move forward before finishing an answer (posting tourettes :-)

Good to see your project to update your blog to a website and join the dots across the US is underway, Who is the "CLL society" made up of?

The new CLLSA website test facility is now approaching final stages of construction and is being populated with current reputable information , we hope to go live in the New year. This will primarily focus on perspectives, clinical provision and support resources for UK and European patients and their families. The science is the same and the arguments, but how this is delivered and how it is made available by health providers differs greatly outside the US. I hope we can collaborate and strengthen international appeal and relevance of individual resources when meeting current unmet needs.

Sorry i am unable to join you at ASH this year with the website build and our group meeting in London on the 16th it would be one step to far. Have a good conference

Look forward to catching up and watching what you catch in your can



Thanks Nick. Ran into your doc at ASH. Seems like a great fellow. Also met with Jan and Giora.

Ben crazy but good. Can't wait to see you new website.


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