You Can Recover Association - Introduction
1st EUROPACOLON PAN-EUROPEAN AFFILIATES CONFERENCE
28-29th JUNE 2007
BARCELONA
Representatives of europacolon from several European countries as well as some patients and pharmaceutical group Roche attended the First Pan-European Members Meeting on Thursday 28th and Friday 29th of June 2007. The main aim of the meeting was to allow europacolon members to exchange ideas and learn from each other experiences and to help other patients understand the challenge of creating an advocacy group in their own country. Representatives from Belgium, Finland, Hungary, Poland, Portugal, Slovakia, Slovenia, Spain and United Kingdom were present.
The first session of the meeting was designed to introduce each participant and to summarize their experience so far. Tim Searles (Head of Operations Scotland at Bowel Cancer UK) told about his experience when creating office in Scotland. He explained what kind of problems he had had to face and what solutions he might had recommended. In the end he gave several advices for NGO workers.
His passionate speech was followed by Helena Isoniemi, the representative of organization from Finland, not europacolon but possibly becoming affiliate of europacolon, who talked a little bit about their organization and described the situation of colon and rectal cancer (CRC) patients in that country and presented screening program in Finland.
She was followed by Vitor Neves from europacolon Portugal. Portugal was the first country to set up europacolon with Jola Gore-Booth. It was founded in September 2006 and launched in 18th April 2007. He shared his experiences from the difficult beginnings of europacolon to present where there are established clear objectives and a marketing plan.
Next europacolon patient group was set in Spain, which was presented by Carlos Hue and Angel Garcia. Beside describing setting europacolon in Spain they also told attendants about a survey that was done in Spain, results of which were very interesting.
The next speakers, Gabor Oltvai and Leslie Dobolyi from Hungary presented “You Can Recover” association, advocacy dedicated to CRC. They have told about their achievements, i.a. conference associated with the 21st April 2007, which was set as national cancer day in Budapest.
Snezanka Koren and Maja Sotlar, Slovenian representatives, talked about necessity of creating an organization dedicated to CRC in Slovenia since the number of patients keeps on growing and there is only National League of Cancer that partially deals with CRC patients.
In the end of the first day of the europacolon meeting Keith Spencer, one of directors of europacolon had a presentation about epidemiology, issues and challenges for CRC in Europe.
The next day was opened by Professor Eric van Cutsem’s presentation about the future and next steps against Cancer. Professor van Cutsem gave an overview of the situation regarding the treatment of cancer. As he stated early diagnose, good surgery and a proper treatment are the key issues in colorectal cancer.
Following Professor van Cutsem’s presentation participants outlined the situation in their countries regarding treatment, screening and access to it. Europacolon directors, Jola Gore-Booth and Keith Spencer gave several advices and discuss how to solve problems in different countries.
Next presentation was held by Tim Maughan, Consultant Clinical Oncologist & Director, Wales Cancer Trials Network. He spoke about clinical trials, way of testing new drugs and problems that may occur in this area.
In the next part of the meeting Nick Blow from Strategis Communications had presentation about media and influence that patients group can have.
Together with participants he had identified three core messages that summarised the europacolon campaign:
- Need to talk to break the taboo
- Screening is the key and makes economic sense
- Equal access to care and treatment is a right
Nick’s presentation was completed by Gareth Harding’s presentation, freelance journalist and media trainer. He presented a journalist’s point of view and gave very useful tips concerning cooperation with media.
