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New Orleans part 2

written by

Leukaemia Care, Charity

  • part-2

After spending two hours getting into Patricia Cornwell’s ‘Red Mist’ (I am a big fan of her novels).

Eleven and a half hours later we all disembarked at Houston, and two hours later we boarded for the next leg to New Orleans and, after a shorter 70-minute flight, we were again  disembarking, this time at my final destination, New Orleans.

21 hours after I left my home I was collapsing onto my hotel bed a tad exhausted.  Sleep came easily although it didn’t stay that way!  I woke with a start thinking I’d overslept. I showered and dressed only to find it was 5:30 am.  This was fortuitous because my first meeting was to begin at 7:00am three and a half blocks away.

One of the many alliances, coalitions, networks and groups that Leukaemia CARE is a member, is the Worldwide Lymphoma Coalition which takes advantage of ASH to hold its AGM each year.  Many of the members of the coalition attend ASH, so it’s a simple task to just extend the attendance by a day or two to attend the AGM. 

The coalition is made up of 59 member organisations from 43 countries.  It began in 2002 with four countries sharing best practices and now works together in many advocacy initiatives, educational dissemination and support.  Three new members joined this year, two from Portugal, and one from Algeria, and five more are currently undergoing the application process from Israel, Egypt, Kuwait, Lebanon and South Africa. 

The declared mission of the Lymphoma Coalition is:

  1. To be the global source for lymphoma facts & statistics
  2. To improve awareness and understanding of lymphoma’s
  3. Build capacity for new & existing lymphoma groups

I missed day one of the AGM which featured introductions and the sharing of best practice by the members, followed by a session on using the Coalition’s materials and best practices to individual advantage.   

Begoa Barragán Garcia (President of the Spanish Group for Cancer Patients (GEPAC) and President of AEAL (Spanish Association of People Affected by Lymphoma, Myeloma and Leukaemia ) then ran a session on survivorship; ‘How to Set up a Survivorship Program’; what pieces are important in the program and within a patient survivorship plan who should be involved.

The first day finished with simultaneous workshops on ‘Moving your patient organisation toward sustainability’ and ‘Supporting you in leadership’.

I arrived at the AGM of the Worldwide Network of Lymphoma Patient Groups being held at the Ritz-Carlton Hotel on day two.  It was 7:30 and breakfast was being served, followed by group photograph.

The working day began at 8:30 with an hour or so of coalition internal business,  this was then followed by industry presentations from some of the world’s leading pharmaceutical companies; Mundipharma, Gilead Sciences, Pharmacyclics, Pfizer, Celgene, Millennium: The Takeda Oncology Group, Roche and Sandoz.  I will be reviewing all of these sessions later, but there were some real breakthroughs and some amazing new products being introduced for the first time to our group.

After a break for lunch and coffee, Professor John Seymour, Director at the Department of Haematology and Chair of the Haematology Service at The Peter MacCallum Cancer Centre, Australia, a highly distinguished physician with a worldwide reputation, presented his view on ASH 2013: “Lymphoma Update - Lymphoma Treatments and Biology and ASH Highlights.”

The day was rounded off by Dr. Sophia Wang, PhD, giving us all an update on INTERLYMPH (the International Lymphoma Epidemiology Consortium).

May I say phew – information overload!!!  Stay tuned for the next installment.

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