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October 2011 Archives : Myeloma Voices

bdurieblogpicture.jpgMyeloma patients need access to information about their disease to get the best care.  The IMF has been enhancing educational activities in Europe for over 15 years. In 2011, there were 10 Patient &  Family seminars (PFS), 7 Community Workshops, and 7 Doctor Community Workshops throughout Europe.  These meetings bring myeloma information to thousands of patients and hundreds of physicians.  

The last PFS was in Rome on September 30th.  This was the 9th annual PFS in Italy conducted in close collaboration with Dr. Mario Boccadoro, who heads a large myeloma program in Torino, as well as the Italian non-profit leukemia/lymphoma/myeloma foundation (AIL--Associazione Italiana contro le Leucemie), based in Rome. For the first time, the PFS was held at the AIL headquarters in Rome.  This is a beautiful facility with both office space and an amphitheatre-style lecture hall. The building was donated to AIL (it was a cookie factory!), which then did a wonderful job in refurbishing the building with true Italian style and elegance.  Professor Franco Mandelli, the head of AIL, gave a welcoming speech to the audience.  The only downside to the event was that the seating space "maxed out" at ~150, and more than 100 additional patients wanted to attend!  Something to consider in planning for future meetings.  In the past, we have held our meeting at the Mussolini Auditorium, which is part of the University of Rome.  It accommodated over 350 patients and was packed to capacity.

Nonetheless, it was a wonderful day with very active patient participation.  There were presentations by myself, Susie, Mario, and several Italian myeloma specialists, including Professor Robin Foa, currently a director of the European Hematology Association (EHA).  One thing is clear: myeloma patients around the globe have the same questions.  Which treatment should I take?  What are the side effects? What happens if it does not work? And of course, "When will there be a cure for myeloma?!"

 A unique aspect of the Rome PFS was that Debbie Birns from the IMF Hotline team also participated, and had a chance to meet with Alessandra Malfintano, a new hotline coordinator just starting to work with Professor Mario Boccadoro in Torino.  Alessandra is a clinical trials nurse for Dr. Boccadoro's group, and has been talking to myeloma patients on a regular basis about the research that is being done in Torino and about the risks and benefits of participating in various clinical trials.  She is a bright, caring, and lovely young woman who is eager to pioneer the first myeloma hotline in continental Europe. Debbie was able to spend part of the day with Alessandra, giving her pointers on how to set up the new hotline and what kinds of questions to expect. Alessandra jumped right in and helped a man who approached during the lunch break, passing her first "test" with flying colors.

This is an exciting and important new initiative.  We expect that this will be the first in a series of hotline services to answer questions for patients across Europe.

So the Italian sojourn for the IMF was a great success. Individual patients getting personal questions answered. Myeloma patients feeling connected to the resources available in Italy and around the world. One more step towards providing the best care possible. One more reminder to stay focused on searching for a cure!