Neurofibromatosis (NF) knows no boundaries, and while the Children’s Tumor Foundation (CTF) is based in the United States, its work is global, funding and collaborating with the best researchers on the planet working on NF. In that spirit, we highly applaud the efforts of the Innovative Medicines Initiative (IMI). The IMI, based in Brussels - Belgium, is a public private partnership between the European Union and the European Federation of Pharmaceutical Industries and Associations that facilitates research collaboration in order to advance the development of medical treatments.
The IMI held its annual Stakeholder Forum last week in Brussels, and CTF President and Chief Scientific Officer Annette Bakker, PhD, was in attendance. The annual IMI Stakeholder Forum brings together key leaders of research institutions, medical centers, pharmaceutical companies and government officials.
The theme of the event was open innovation, and first day of the event (October 18) featured discussions on how IMI can continue to push the boundaries of open science and open innovation through multi-stakeholder collaborations.
During the update on the flagship projects (INNODIA, PRISM & RADAR AD and ULTRA DD), it became really apparent that IMI is tackling the difficult but absolutely essential initiatives that allow an acceleration in the availability of quality treatments for patients, and the infrastructures that were set up during these IMI projects will be easily translatable to future projects.
Dr. Bakker participated on October 19 in the Patient Engagement forum on a panel titled “Redefining Patient Engagement: Innovative Models of Collaboration,” and outlined for those in attendance the innovations of the Children’s Tumor Foundation in patient empowerment and patient’s research participation. The panel agreed that patient engagement efforts should be focused on education, transparency, reciprocity, and respectful trust-building between the research and the patient community. “The end goal of all patient engagement efforts should be that the patient is considered as a partner in the R&D process,” says Dr. Bakker.
Patients have been an integral part of IMI since the beginning, and patients are active participants in IMI projects, activities and events. The outcomes of the Stakeholder Forum will help IMI to take its patient engagement strategy to the next level, to ensure the patient voice continues to influence IMI’s work at all levels.
Dr. Bakker added, “As we work to find solutions for NF and other rare diseases, it’s promising that organizations like the IMI, under the leadership of its Executive Director, Pierre Meulien, are bringing energy and inventive thought to how to improve the R&D process. IMI’s creativity in working with Pharmaceutical and Biotech industry is an inspiration for the Foundation and we are excited to understand IMI’s openness to also engage with nonprofit foundations from across the world.”