The Children's Tumor Foundation is one of IMI's Associated Partners. Annette Bakker, the Foundation's president, says that the unique IMI model ensures alignment between industry and public partners
The Children’s Tumor Foundation is a renowned international non-profit organisation that seeks to advance research into a disease called neurofibromatosis, a genetic disorder of the nervous system. Raising funds is just one part of its mission; the Foundation also tries to maximise awareness and visibility of neurofibromatosis and provide support for the people whose lives are affected by it. The CTF is one of IMI's Associated Partners. The Foundation's president, Annette Bakker, spoke to the IMI programme office about the partnership.
Q. How did the relationship between the Children’s Tumor Foundation and IMI begin?
Annette Bakker: After an informal conversation with IMI Executive Director Pierre Meulien, I was invited to participate on a patient engagement panel at the IMI Stakeholder Forum. We started to build a relationship and we have been partners since. In parallel, we have advocated at the EFPIA level to be included in the Oncology Strategy setting, as part of the EFPIA Partners in Research platform. We have also been a member of the Strategic Governing Group (SGG) on Oncology, which feeds topics to IMI.
Q. What benefits are there for your organisation to partner with IMI?
Annette Bakker: The partnership helps attract both industry interest and EU funding to neurofibromatosis (NF) and rare diseases. IMI topic selection is a great way to measure industry appetite for certain research topics. We also benefit from IMI credibility in the European landscape.
Q. Which projects have you specifically been involved in? What is the nature of your contribution?
Annette Bakker: Our Foundation is involved in EUPEARL, which works on platform trials for rare diseases, with NF being its prototype. We have a crucial role as an Associated Partner in the leadership of the project and co-lead of the work package on NF. We have also provided experience to the PARADIGM project, with patient involvement throughout the project.
Q. What do you think is the benefit of a public-private partnership in health like IMI, as compared to other funding programmes?
Annette Bakker: The scale of the funding enables real impact. Also the unique business model ensures alignment between industry and the public partners on what matters most. The commitment of all the stakeholders is also a great benefit.
Q. Based on your experience, do you hope to partner with IMI’s successor, IHI?
Annette Bakker: Partnering with the IHI would be key for us. Foundations are the connectors to all stakeholders, including the patient community, who are the ‘clients’ of the end-products of research. By including a larger number of non-profit Associated Partners, we can increase the awareness in the private sector of the needs of these disease communities. The partnerships with foundations also open up collaborative options with non-EU partners. It is important to keep foundations included when potential research topics are proposed, whether through the Oncology SGG or otherwise.