Lymphoma Coalition. Karen Van Rassel

Transcription

1 Lymphoma Coalition Karen Van Rassel European Haematology Patient Advocacy Strategy Meeting Stockholm, 14 June 2013

2 Overview of Lymphoma Coalition LC Member Organisations Patients Since 2004 incorporated in member organisations from 44 countries Patient leaders in blood cancers 50 Medical Advisory Boards Think Global Act Local 350,000+ database 2,675 website visits/month

3 Mission and Vision The Lymphoma Coalition is a global organisation of notfor-profit lymphoma patient organisations with the vision to free the world of lymphomas. Our mission is: to improve awareness and understanding of lymphomas; to be the global source for lymphoma facts and statistics; to build capacity for new and existing lymphoma groups.

4 Governance Global Board of Directors - from membership Anna Williamson, Australia; Leukeamia Foundation Pru Etcheverry, New Zealand; Leukaemia & Blood Cancer NZ Blaz Kondza, Slovenia; Društvo bolnikov z limfomom Begoña Barragán, Spain; AEAL & Grupo Español de Pacientes con Cáncer (GEPAC) Guy Bouguet, France; France Lymphome Espoir Sarper Diler, Turkey; KOKDER Brian Tomlinson, USA, Lymphoma Research Foundation Virginia Sosa, Uruguay; Grupo Linfoma Uruguay Karen Van Rassel, Global; Executive Director Global Medical Advisory Board KOL s in lymphomas Dr. Laurie Sehn, Chair, Vancouver, Canada Professor Andreas Engert, Cologne, Germany Dr. John G. Gribben, London, England Dr. Gilles Salles, Lyon, France Dr. John Seymour, East Melbourne, Australia Dr. Julie Vose, Omaha, Nebraska, USA

5 Most important partnerships LC member organisations INTERLYMPH Research Consortium Medical Adivsory boards around the world

6 Key Activities Share best practice, information and materials among member organizations Mentoring Program Website with up to date information on latest therapies, CT therapies, demographics etc. Private member section for further supportive information Ongoing communication and information dissemination for members via newsletters, website and social media Lymphoma einformation Project Gathering of lymphoma data therapy access, demographics, standard of care and clinical trial data bases available by member country Surveys Global Patient Survey every two years with close to 1700 respondents each year Members Surveys yearly with different focus topics, for example; - what their issues are as an organisation and within their country - what their needs are for support and ongoing education - clinical trials overall understanding and local issues Annual LeIP Report Card with additional back up summary reports World Lymphoma Awareness Day September 15 th Provide global toolkit for local execution

7 EU policy activities LC not presently formally on committees or in partnership but represented through local member organisations

8 Most important achievements to date Cohesive membership working together with a desire to meet the Coalition mission WLAD - since 2004 awareness of lymphoma up by 15% based on patient survey results and the biggest growth was in France Lymphoma einformation Project - building information resource so all member organisations are on level playing field pertaining to information The term "capacity building" can be used many different ways. The one description we like is: capacity building aims to strengthen parties' ability to work together for their mutual benefit by providing them with the skills and tools they need to define problems and issues and formulate solutions. This is the Lymphoma Coalition, formally and informally.

9 Challenges faced in running an EU/international network Many challenges Language barriers Different levels of expertise Cost of mentorship Local issues vary Cultural differences especially in marketing Members busy with local organisation time & resource challenged