- Organization name: Youth Cancer Europe
- Country: based in Romania
- Intervention zone: active across Europe
- Creation date: 2015
- Status: NGO (foundation)
- Staff: 3 employees, 100 volunteers
- Annual budget: €170,000
- Main financing: corporate sponsorships
- Youth Cancer Europe is committed to speak with a single representative voice of young people with cancer and together with other relevant stakeholders, through strategic partnerships in Europe, engage with EU policy-makers to influence the European health and research policies.
- Our network is made up of individuals and/or organisations representing young people affected by cancer from across Europe.
- We believe that together we can help shape European policy, promote research, fight for better access to care, for better treatments, better conditions and help fix disparities that exist across Europe for young people fighting cancer. Youth with cancer must be present from the beginning when setting any kind of agenda for research and policymaking, to ensure that priorities are in line with patients’ priorities. We can provide decision makers first-hand with the patient perspective.
- Membership is free and open for any cancer patient and cancer survivor between the ages of 18 and 39
- Youth Cancer Europe prepares youth with cancer for the growing role of patients and patient advocates and raises awareness about issues affecting European youth with cancer.
- The agenda of Youth Cancer Europe includes:
➔ Age appropriate and equally accessible cancer treatment cross Europe
➔ Long-term follow up and quality of survivorship
➔ Political and regulatory representation of youth with cancer
- In the White paper launched in 2018 at the EU Parliament, YCE focuses on five specific domains that negatively affect cancer
patients and survivors. The white paper will highlight the problems and provide policy solutions in the following domains:
➔ Ending discrimination against cancer survivors when accessing essential financial services such as mortgages and life insurances
➔ Improving access to cross border healthcare for cancer patients
➔ Increasing the availability of fertility preservation for cancer patients and fertility treatment for cancer survivors
➔ Increasing the availability for dental and plastic reconstructive surgery services for cancer survivors
➔ Increasing mental health support for cancer patients and survivors
Our areas of intervention
- 2021 September: YCE won the Emerging Europe Award for Health and Social Care Initiative of the Year
- In January 2021, YCE’s founder, Katie Rizvi spoke at the European Commission’s Beating Cancer Committee’s (BECA) public hearing, set up to aid MEPs draft their report on Europe’s Beating Cancer Plan, and live streamed from the European Parliament. The consultation focused on patient rights, survivorship and quality of life, and more specifically on topics such as the Right To Be Forgotten and other priorities included in YCE’s White Paper.
- On World Cancer Day 2020, YCE was invited by the European Commission to be part of a major event to launch Europe’s Beating Cancer Plan.
- Victor Gîrbu, a lawyer, young cancer survivor and ambassador for YCE, was invited by the European Commissioner for Health and Food Safety, Stella Kyriakides to be one of the main speakers at the event. Gîrbu delivered a powerful and emotional speech in which he called on the EU to beat the disease “that stole my childhood”, receiving a standing ovation.
- At their second event in the EU Parliament, YCE have revealed in 2019 how a shocking majority of European citizens, including youth with cancer, are unaware of the Cross Border Healthcare Directive and Regulation on Coordination of Social Security Systems: two crucial documents that give EU citizens the right to receive life-saving treatment for free in any other Member State, paid by their own country of residence.
- The revelation was made during a roundtable discussion at the European Parliament in Brussels. In attendance were an audience of MEPs and other key cancer stakeholders (including newly elected members of the MEPs Against Cancer group), along with members of YCE who shared their own stories, highlighting how the system looks from the perspective of youth with cancer across the EU.
- In 2018, YCE hosted its first event at the EU Parliament in Brussels, to call for EU-wide legislation to put an end to financial discrimination faced by cancer survivors across Europe, under the banner of the “Right To Be Forgotten”.
- YCE’s call to end financial discrimination against cancer survivors, urging national governments and financial regulators across Europe to extend and implement those legal rights already established in France, is the first of five measures included in YCE’s multi-faceted white paper. YCE was hosted at the European Parliament by MEPs Sirpa Pietikäinen and Cristian Busoi.