2016 Global Summit Reinforced Know Your Subtype
The 2016 Lymphoma Coalition (LC) Global Summit was held pre ASH November 30th and December 1st. Forty seven attendees from 26 countries gathered in San Diego, California for capacity building and sharing of best practice. Member organisations spent two full days hearing from professionals on the latest therapies and research, as well as attending workshops on advocacy development, focusing on working with the EMA and how to bring the patient perspective to local advocacy efforts. Experts presented on Understanding Pharmacoecononics as well as Impact Reporting.
In keeping with the Coalition’s Know Your Subtype campaign, members and sponsors spent a full afternoon broken out into subtype working groups to discuss and determine discrepancies in care, unmet needs, systemic issues and finding potential solutions.
As always, the Global Summit was packed full of learning and information for attendees to take back to their local organisations for use in their daily activities.
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 Kocić (Serbia)
Second Row: Silvia Ferreira (Brazil), Mónica Giraldo Castaño (Colombia), Haydeé González (Argentina), Robin Markowitz (Canada), Peggy Ann Torney (USA), Anna Dominica Tapel (Philippines), Tamaki Katayama (Japan), Begoña Barragán (Spain), Aistė Strelčiūnė (Lithuania), Miroslava Fövényes (Slovakia), Sharon Millman (Australia), Sharna Moloney (Australia), Vandana Gupta (India), Biljana (Biba) Dodeva Hristovska (Macedonia), Merula Steagall (Brazil)
Third Row: Brenda Springer (Barbados), Ibolya Kéri (Hungary), Betsy Dennison (USA), Sara McKinnie (USA), Lorna Warwick (Canada), Ronald van Veen (Sweden), Jheric Delos Angeles (Philippnes), Natacha Bolaños Fernandez (Spain), Charlotte Roffiaen (LCE), Anita Waldmann (Germany), Ieva Drėgvienė (Lithuania), Pirinka Petrova (Bulgaria)
Back Row: László Mucsi (Hungary), Gail Sperling (USA), Lauren Pretorius (South Africa), Kim Thompson (LC), Shafia Abdulhusein (LC), Carl Harrington (USA), Karolis Ažukaitis (Lithuania)
The 2016 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. Through the research, it became clear that breaking out data by subtype is critical. NHL is not a disease in itself but a series of subtypes that need to be independently tracked to ensure proper analysis and reporting. We call upon you to remove NHL from your vocabulary, report by subtype and provide patients with the subtype information they require to best understand their diagnosis and treatment. To download the 2016 LeIP Report Card on Lymphomas click here.
Lymphoma Coalition was also pleased to actively promote the first and only mobile application dedicated to quality of life issues faced by those with Hodgkin lymphoma. The Lyfe app is a comfortable place for HL patients and their caregivers, family and friends to hang out and find psychosocial support and guidance no matter where they are in their journey.
This support takes the following forms:
· Articles (quality of life, supportive tips on how to deal with different aspects of the patient journey, links to member organisations)
· Resources (calming sounds/mindful/meditation tools, link to LC Global Database)
· Community (build their own profile, share stories, connect with other patients and caregivers)