A successful regional break-out day for Europe’s member organisations was held as part of this year’s global summit in Prague, Czech Republic, on 6 and 7 July 2018. The overall focus of the regional summit was on LCE’s lobbying and advocacy work in Europe in order to improve lymphoma outcomes and address inequalities in treatment and care. To help with this, the sessions were facilitated by Stefan Gijssels, founder and consultant of SEBOIO public affairs consultancy and also the former Vice President Communications and Public Affairs for Janssen EMEA. Over the course of four sessions across two half-days, delegates from the Coalition’s member organisations heard talks on the following subjects:
- Regional case studies from Finland and Bulgaria on access to new treatments (by Minna Anttonen, Executive Director, Association of Cancer Patients in Finland, and Pirinka Petrova, Founder and Chair, Bulgarian Lymphoma Patients Association).
- Lobbying and advocacy skills building introduction (Stefan Gijssels).
- The patient perspective on defining value in treatment (Gilly Spurrier, Vice President, Melanoma Patients Network Europe).
- The European Haematology Association’s work to date on the Magnitude of Clinical Benefit Scale (Jonathan Pearce, Regional Director Europe, LCE).
- The industry perspective on treatment value – working together: the future of cancer care (Natalie Buhl, Senior Manager Communications and Public Affairs – Oncology, Janssen EMEA (speaking on behalf of EFPIA Oncology Working Group)).
- A Community Advisory Board for lymphoma (Rob Camp, Patient Engagement Senior Manager, EURORDIS).
Where permission has been given, video recordings of these presentations and the accompanying slides are available on Lymphoma Coalition’s YouTube channel.
LCE’s fourth regional summit was held in Madrid, Spain, on 13 and 14 March 2017, and was attended by over 50 people from 23 countries. The summit focused on:
- Capacity building.
- Communications strategies.
- Patient organisation involvement in health technology appraisals.
Presentations, workshops and roundtable discussions took place with representatives from member organisations, haematologists, nurses, the Spanish HTA regulator, and industry representatives.
The videos below demonstrate ideas, plans and activities that member organisations can use to support lymphoma patients/carers in Europe.