2017 Global Summit Focus on Patient Voice
The 2017 Lymphoma Coalition (LC) Global Summit was held pre ASH December 6th and 7th. Forty six attendees from 24 countries gathered in Atlanta, Georgia for capacity building and sharing of best practice. Member organisations spent two full days learning from experts on informed or activated patients, communicating with healthcare professionals, and helping patients cope with fatigue. As well, everyone participated in interactive workshops focused on ensuring the patient voice is heard locally in the drug approval process, regardless of whether patient organisations have been given a formal voice.
In keeping with LC’s focus on Patient Voice, members and sponsors spent a full afternoon jointly discussing current gaps in the drug approval systems globally, identifying areas where the patient voice should be included, as well as steps that can be taken to ensure the patient voice is heard.
Front Row: Karen Van Rassel (LC), Guy Bouguet (France), Susan Thornton (USA), Sarper Diler (Turkey), Rosmarie Pfau (Switzerland), Pru Etcheverry (New Zealand), Lauren Pretorius (South Africa), Maja Kocić (Serbia)
Second Row: Nadav Diringer (Israel), Amada Fowler (USA), Zack Pemberton-Whiteley (UK), Ronald van Veen (Sweden), Sara McKinnie (USA), Carl Harrington (USA), Lorna Warwick (LC), Savitri Bridgeman (Barbados), Monica Pasqualin (Brazil), Min Jeong Kim (South Korea), Victor Gonzáles (USA), Chulhwan Lee (South Korea), Alicia Smith (USA), Peggy Ann Torney (USA) Kim Thompson (LC), Natalie Dren (LC). Third Row: Blaž Kondža (Slovenia), Shawn Sajkowski (LC), Stephen Scowcroft (UK), Haydeé Gonzáles (Argentina), Hongfei Gu (China). Fourth Row: Vandana Gupta (India), Elizabeth Lye (Canada), Betsy Dennison (USA), Stanislava Ilarionov (Bulgaria). Fifth Row: Simona Pavúková (Slovakia), Dražen Vincek (Croatia), Daniela Santos (Brazil), Mairead Ni Chonghaile (Ireland), Melanie Teixeira (South Africa), Martin Monov (Bulgaria), László Mucsi (Hungary), Dina Steagall (Brazil), Gary Nolan (UK), Natacha Bolaños (LCE), Ibolya Kéri (Hungary), Anita Waldmann (Germany)
The 2017 Lymphoma eInformation Project (LeIP) Report Card on Lymphomas was launched at the Global Summit and handed out at the LC booth during the American Society of Hematology (ASH) conference that followed the Global Summit.This report focused on the impediments that prevent patients from receiving optimal care – unequal access to clinical trials, no or limited funding/reimbursement of therapies, limited supportive care and limited access to specialists and treatment centres. To download the 2017 LeIP Report Card on Lymphomas click here.