Head & Neck Cancers
For several years ECPC has partnered with the European Head and Neck Society (EHNS) to deliver the Make Sense Campaign. The campaign currently spans many European countries, including Belgium, Croatia, Denmark, Finland, France, Germany, Ireland, Italy, Poland, Portugal, Romania, Russia, Spain, The Netherlands , UK with potential to expand in 2016 to Austria, Greece and Switzerland.
In 2012, four taskforces comprised of leading experts in head and neck cancer across Europe were formed and agreed to conduct activities that would contribute to raising awareness of head and neck cancer and ultimately improve outcomes for patients with the disease.
At this time ECPC was delighted to be invited to become a member of the Partnership Building taskforce and remains an integral member to this day. The initial invitation was made due to ECPC’s aligned values and objectives with the campaign, along with our close connection to patients.
The objectives of the Partnership Building taskforce are to:
- Build relationships with key European partners to drive awareness of head and neck cancer to aid better prevention and treatment strategies
- Develop relationships with patient advocacy groups and other associations
As part of our efforts to meet the taskforce objectives, the following actions have been undertaken:
EU Parliament Activities
In 2013 we were able to secure support from over 20 MEPs when launching our White Paper “Head and Neck Cancer: The ‘Curable’ Cancer That Kills Over Half of All Sufferers. Why Not do Something About it?” in the European Parliament. In 2014 we have continued to build on this support by submitting a written question to, and by holding an open discussion with, the EU Commission resulting in a positive response. As a consequence, important, long-standing partnerships have been maintained and we have raised awareness of our campaign within the Parliament.
Click here to download the White Paper.
In 2015 our champion MEP on head and neck cancers, Daciana Sarbu, triggered a debate in ENVI Committee on rare cancers and head and neck cancers in particular.
Patient Advocacy Activities
Head and neck cancer remains underdiagnosed, and those who are diagnosed require long-term support needs beyond their diagnosis and initial treatment. While there is representation for head and neck cancer patients at country level, over recent years a need was identified for a united network of patient advocacy groups was not in place. By establishing a European network it will be possible to support people with head and neck cancer at European level whilst creating opportunities to share current thinking and best practice.
We are thrilled to report that in 2014 we have successfully established agreement from European 10 patient groups to form a Make Sense Campaign European PAG Network, which aims to provide the foundations to support and assist all patients with head and neck cancer across Europe to receive the best possible care.
In 2015, our activities were tied to the theme of #UnitingVoices. Through this theme we:
- Encouraged head and neck patients to have a voice, and speak up for improved care across Europe;
- Gave patients a sense of community, to show them they are not suffering alone;
- Highlighted the benefits of multidisciplinarity care and how by uniting all aspects of patient care, patient outcomes can be improved.
Thanks to TeamECPC in 2015 we succeeded to fundraise via various sports events the necessary budget that allowed us to partner with our member organisation GEPAC and produce a testimonial clip with the touching story of Spanish mezzosoprano Carmen de Lucas that had tongue cancer.
In 2015 "Health for the Community Romania" joined the campaign and they succeeded some major achievements:
- 2 medical clinics, 6 dental cabinets, 13 doctors participated in the campaign in Bucharest;
- the campaign was presented at the National Congress of Medical Oncologists;
- awareness raising materials were distributed across Romania in Bucharest, Timisoara, Oradea and Constanta.
Click here to download the infographic with the results of the campaign in 2015.
In 2016 ECPC looked to build on the success of the #UnitingVoices social media campaign, by Uniting Voices across patients, caregivers and HCPs for head and neck cancer. Once again using the social media tool 'Thunderclap' to increase the impact of our campaign messaging and raise awareness of head and neck cancer, we reached in 2016 over 100,000 people – which means our messages reached and engaged new audiences.
This initiative was supported by Merck.