Node News
Member Newsletter
December 2016
Thank you to everyone who attended the Lymphoma Coalition Global Summit in San Diego, California. It was
because of your attendance, support and participation that this year’s meeting was a huge success.
FROM LEFT TO RIGHT: Front row: Jonathan Pearce (UK), Rosmarie Pfau (Switzerland), Guy Bouguet (France), Susan Thornton (USA), Sarper Diler (Turkey), Karen Van Rassel (LC),
Guy Tavori(Israel), Maja Kocic (Serbia) Second Row: Silvia Ferreira (Brazil), Moinca Giraldo Castano (Colombia), Haydee Gonzalez (Argentina),
Robin Markowitz (Canada), Peggy Ann Torney (USA), Anna Dominica Tapel (Philippines),Tamaki Katayama (Japan), Begoña Barragan (Spain), Aiste Strelčiūnė (Lithuania), Miroslava
Fövényes (Slovakia), Sharon Milman (Australia), Sharna Moloney (Australia),Vandana Gupta (India) Biljana (Biba) Dodeva (Macedonia), Merula Stegal (Brazil) Third Row: Brenda Springer (Barbados), Betsy Dennison (USA), Sara McKinnie (USA), Lorna Warwick (Canada), Ronald van Veen (Sweden), Jheric Delos Angeles (Philippines), Natacha Bolaños
Fernandez (Spain) , Charlotte Roffiaen (LCE), Anita Waldmann (Germany), Ieva Dregviene (Lithuania), Pirinka Petrova (Bulgaria), Karolis Ažukaitis (Lithuania) Fourth Row: Ibolya Keri
(Hungary), Lazslo Mucsi (Hungary), Gail Sperling (USA), Lauren Pretorius (South Africa), Kim Thompson (LC), Shafia Abdulhusein (LC), Carl Harrington (USA)
Dear Coalition Members,
The results are in and it is official…. we can’t square dance!
Whatever does “face your corner” mean anyways? For those that missed
the Global Summit, this does not make sense so have a look at the
pictures and you will get an idea of what we are talking about.The social
event this year was a country hoedown where we were led through the
dance steps for square dancing and line dancing.
I think we can give ourselves a B- on the line dancing but let’s not even
discuss the square dancing. Which way is to the left, to the left?
Hats off to Robin and her husband Mitch for looking so good.
This month’s newsletter is to capture the Global Summit in picture
format. The Summit was attended by 30 organisations representing every
continent with 48 attendees in total.
The Global Summit presentations can be found in the members’ section
of the LC website under Global Summit 2016.
Connect with us online!
lymphomacoalition.org
Contact Us
LC Global Summit
These reports help us understand by subtype, the patient
experience that goes hand in hand with therapy access
and clinical trial availability.
Charlotte’s Global Summit workshop may help to
support you in your efforts to build a “subtype story”
and support your advocacy work.
To start the Global Summit, Susan Thornton (USA) lit a
candle in honour of all those who could not be with us.
Great feedback was received from all attendees of the
Thursday afternoon subtype round-table discussions.
One woman told me when I saw her at ASH,
“that session was the highlight of my ASH.”
Someone else told us that it was “paradigm shifting” in
how we all related to each other.
Congratulations to all those that participated and
facilitated the table discussions.
The table notes are attached to this email. Let us know if
anything is missing.
Just a reminder that the subtype reports are available
online and can be used in your subtype planning and
advocacy work.
To date you can read about DLBCL, FL, CLL, HL, WM,
MCL and CLL Europe.
In the first quarter of 2017 the Marginal Zone report
will be written and the European Landscape Report will
be updated.
Subtype Report Workshop (Day 1)
Connect with us online!
You are welcome to use these reports in any capacity,
we just ask that you reference the LC material by report
title.
The 2016 ASH abstracts are being sorted and will be
made available in the Library Resource over the coming
weeks.
LC is now a member of Eurodis, the umbrella organisation
representing rare disease patients in Europe.
This will add new opportunities of knowledge and
capacity-building for members, and enhance capacity to
engage with the European institutions.
European members should watch for the invitation to
the LCE 2017 members meeting that will take place on
13 and 14 March in Madrid. Do not hesitate to contact
Charlotte in case it does not reach you.
We wish you a very happy, restful holiday and a
joy filled successful 2017.
Warmest wishes,
Karen & Charlotte
Lunch in the courtyard
lymphomacoalition.org
Contact Us
LC Global Summit
Natacha Bolaños (Spain)
Guy Tavori (Israel)
Guy Bouguet (France)
Day 1, enjoying their time together
Dr. John Spinelli (InterLymph)
Karen (LC),Tamaki Katayama (Japan)
Andrew Means, Impact Reporting Presentation
Sarper Diler (Turkey), Vandana Gupta (India)
AGM (Morning, day 2)
Dr. João Carapinha presenting Pharmacoeconomics
Charlotte Roffiaen (LCE)
Connect with us online!
Lauren Pretorius (South Africa), Jonathan Pearce (UK)
Karen Van Rassel (LC)
lymphomacoalition.org
Contact Us
LC Global Summit 2016
Follicular Round-table #1
Hodgkin Round-table
Follicular Round-table #2
T-Cell Round-table
Presenting discussion outcomes (CLL round-table #2)
CLL Round-table #1
DLBCL Round-table
“Other Lymphomas” Round-table
Carl Harrington, Peggy Ann Torney, Meghan Gutierrez
Carl Harrington (WM round-table)
Connect with us online!
CLL Round-table #2
lymphomacoalition.org
Contact Us
LC Global Summit
Everyone gathered in the courtyard to take a group picture after the round-table discussions
Members sharing time together
Celgene recognised for their continued partnership
David, Susan, Guy, Biba, Charlotte, Sarper,Vandana, Haydee at the LC booth during ASH
Connect with us online!
Guy Bouguet recognised for his dedication to Lymphoma Coalition
Takeda Oncology recognised for their continued partnership
Karen and David (LC) at the booth during ASH
lymphomacoalition.org
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