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
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.
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
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.
We are all in this together.
Volunteer Medical Director of the CLL Society
Labels: Chronic lymphocytic leukemia, CLL, CLLAN, patient advocates