Mobilising public support to improve development of, access to and kinder drugs for children with cancer – a grass root NGO/Parent led movement


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Angela Polanco1
1Bethany's wish

Abstract

Background

Unite2Cure is a pan-European parent/NGO led movement calling for regulatory change for children with cancer.  We aim to mobilise public support, awareness and progress in the development of, and access to, better and kinder drugs for children/teens with cancer. 

We aim to:

  • Campaign for change to current European law, calling for better incentives and obligations for industry to develop childhood cancer treatments
  • Disseminate new models of care that are being designed to assist drug development in the childhood cancer sphere of practice.

Method

We have:

  • A call to action
  • A website www.unite2cure.org
  • A mission statement
  • A set of agreed principles and team structure
  • A clearly defined communications strategy/plan

Results

  • An online petition to change European legislation – currently at 1,500 people.  Formal support also comes from a wide range of stakeholders including: doctors; academics; pharmaceutical representatives; lawyers and politicians.  
  • A collective submission of a ‘call to action’ to SIOPE on how European regulations need to be changed.
  • Invitations to speaking events including national and international conferences.
  • A toolkit of communication/lobbying materials, available for use by other parent groups/NGOs across Europe to replicate the work done by Unite2Cure.
  • A website reaching an average of 6,000 people each week. 

Conclusion

Unite2Cure has been formed to build upon, develop and push forward the passion and drive of the people already affected by and working in this field of childhood cancer research and drug development.

Unite2Cure wants to mobilise, drive forward and create action for change for children with cancer. We want to bring together the talent and passion of individuals and create a highly professional, targeted approach to change.  This approach is underpinned by input from high level industry experts and a highly experienced founding member group and communications team.