The first edition of EHS Task Force Public Debate on “Rare Diseases, Advanced Therapies – with the Focus on Gene Therapy” gathered 7 renowned experts from the health sector and attracted many viewers.
We extend our special thanks to our speakers and viewers and wish to meet again at the European Health Summit on 9 December 2021.
AMONG THE HIGHLIGHTS
Prof. Michel Goldman, President, Moderator, President I3h Institute: “Now that the pandemic is more or less under control, it is time to address major public health issues and especially rare disease research.”
Irene Norstedt, Director, People Directorate, DG RTD, European Commission: “Rare disease is a very challenging area. We must collaborate with all sectors at both EU and global level. The EU has already invested quite heavily & will continue to fund research.”
Simone Boselli, Director of Public Affairs at EURORDIS: “We are preparing our patients to give input that is timely and effective through training. Meaningful patient input and engagement at all levels are important also for clinical trials.”
Dirk Vander Mijnsbrugge, Vice President, Medical Affairs Lead Rare Diseases at Pfizer: “The Covid-19 pandemic created a sense of urgency which led to an unprecedent level of collaboration, openness & willingness to implement innovative thinking & transformative procedures. Hopefully we will take these lessons learned and apply them to gene therapies.”
Kaja Kantorska, Policy Officer Pharmaceuticals, DG SANTE, European Commission: “We’re reforming the big pharmaceutical regulation according to three main goals: ensuring timely approuval, enhancing and boosting the development of innovative products and providing better medicine access to patients.”
Brieuc Van Damme, Director-General Healthcare at RIZIV-INAMI: “It is important to facilitate early dialogue between industry, payers & regulators where all actors share their expectations about what they are willing to pay. Contractual pacts can be used to that end.”
Prof. Hildegard Büning, President, European Society of Gene and Cell Therapy: “We have to address three issues: access of patients to the therapies, improving the current therapies and dealing with manufacturing issues.”