European Cancer Patient Coalition is a big ship sailing for the benefit of European cancer patients. On the ship there are several floors and levels: the EU high level advocacy, intercourse with different stakeholders, the administration of the association and – the most important part of the ship – the services for the members and for the cancer patients. The success of the ship depends on how fluently and openly information and ideas flow up and down on the vessel. The patient perspective grows from systematic search for patients’ experiences and real life knowledge.
This was the view I learned when I served this ship as the member of the Board for a short period of 2017 -2018. I saw that the board works best as a team when the expertise of each member is respected and taken advantage of. I am not a cancer expert – but a layman patient and advocate. I felt that my experience in administration and policy communication in a national NGO could give some added value for ECPC. I also discovered that in ECPC there is room for the Nordic pursuit for compromises.
My degree is Master of Science in Political Science (University of Helsinki 1972). I made my professional career on road safety branch as a managing director in the Central Organisation for traffic education and road safety campaigning in Finland. I was a board member in the International road safety coalition PRI and participated in the Nordic road safety cooperation.
During the last 10 years I have acted as a cancer patient advocate and board member in the Association of Cancer Patients in Finland. I am interested in patient safety, policy issues and in the quality of lives of survivors. I have dealt with these issues in my presentations in cancer related conferences and articles.
Every survivor needs carers and peers. My family is an important actor for my quality of life. I have a wife, two daughters, three grandchildren and mother age of 95 years. They and a group of close friends keep my thoughts out of cancer.
Two weeks after my retirement I got suddenly a diagnose of Follicular Lymphoma. I had to reverse a new page of my life. I knew only the awful reputation of the decease. During the last ten years I have seen the progress in cancer treatments and the strengthened voice of patients on the cancer field. I have seen the inequality between the European fellow patients. Increased interplay among ECPC members could support the official cross boarder initiatives. I hope that the Nordic cancer patient organisations could have a role in this interplay.
We understand that when you make a donation, you want to know exactly what happens to your money. We aim to be clear and transparent when it comes to using your contributions in our mission to fight cancer.Your donations not only help us to empower the cancer patient community and make a positive difference to healthcare, treatment and accessibility, but also enable us to:
ensure our members are engaged and feel part of an active community through information, training, unique resources, tools, opportunities and networking at a national and European level
legitimise our position of cancer patient representatives before decision-makers
build a reputation as a cancer patient expert within the scientific community
find partners sharing the same vision, values and goals to work together on projects
get the media’s attention in order to publish and disseminate our messages