Tuesday, May 24, 2016

Patient Advocacy in CLL (chronic lymphocytic leukemia)


This past weekend I was in Paris representing the US (and Canada) for the planning meeting for the CLL Advocacy Network (CLLAN) that is being organized in Europe with a global reach. Our first meeting for CLL advocate organizations will be in Belgrade, Serbia in November. If you are an advocate and are interested, please contact me.

We were honored to have the mentorship of both Giora Sharf who together formed the non-profit organizations, The CML Advocates Network and the Leukemia Patient Advocacy Foundation and also Nick York of CLLSA, the UK based CLL Support Association. Their presence helped provide an experienced-based foundation for this new CLL advocacy organization. 

You can see my past interview with Giora and Jan Geissler, another one of the founders of CML Advocates Network and who is also heavily involved with EUPATI or European Patients‘ Academy on Therapeutic Innovation. They discuss their studies on medication adherence in CML, a topic that will have increasing relevance in CLL. Part 1 is here and part 2 is here.

This week in the Living Well with CLL/Support section of the CLL Society website, we’ve posted an interview with Sharon Millman, the CEO of another non-profit organization, Lymphoma Australia, located in Brisbane. The CLL Society partnered with them to host a patient/caregiver program prior to the iwCLL meeting in September 2015. You can read about their organization and watch my interview with Sharon here. Please excuse the video snafu towards the end of the interview where Sharon is slightly out of the frame.

THANK YOU AGAIN TO OUR READER POLL PARTICIPANTS! Data analysis is in progress and we are really excited with the preliminary results. We really appreciate the time you spent to contribute to our research and look forward to sharing the data in the future.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD
Volunteer Medical Director of the CLL Society

Labels: , , ,


Post a Comment

Subscribe to Post Comments [Atom]

<< Home