🌟 ERDERA Opening Ceremony Highlights 🌟
We've just wrapped up an inspiring ERDERA opening ceremony with nearly 600 attendees joining online and in person in Paris. Here are some key takeaways from our distinguished speakers:
🔬 Nacer Boubenna, Scientific Director, Head of the Biology and Health Department (French Ministry of Higher Education and Research), emphasised the critical role of ERDERA in structuring the ecosystem to benefit patients: “ERDERA enables collaboration across diverse areas, ranging from research to innovation in diagnosis and care”
🌍 Anne-Sophie Lapointe (PhD), Head of Rare Disease Mission, Department to the Director General of Healthcare Provision (Direction générale de l'offre de soins (DGOS), reminded us that capacity building is essential for creating sustainable networks: “We possess the knowledge and tools to change the lives of millions affected by rare diseases. Let us commit today to shaping a future where no one is left behind”.
💡Irene Norstedt, Director, People Directorate DG RTD, European Commission, highlighted the EU's commitment to advancing rare disease research: “We have invested more than €3 billion in collaborative research over the past 20 years and this has translated into better diagnosis and the development of several new orphan medicines”.
🔧 Arjon Van Hengel , Deputy Head of Unit for Health Innovations & Ecosystems at the European Commission, noted that ERDERA's efforts could greatly progress health research in rare diseases and other fields by pioneering new approaches: “Key to ERDERA’s success are the 24 European Reference Networks (ERNs) and their valuable clinical expertise”.
👥 Virginie Bros-Facer, CEO, EURORDIS-Rare Diseases Europe, referred to the opportunity this new partnership brings to address fragmentation in clinical research: “The strength of ERDERA lies in its comprehensive and inclusive approach, uniting researchers, clinicians, industry partners, and most importantly, patients”.
💊 Guillaume Canaud, Hôpital Necker-Enfants malades AP-HP, shared his inspiring journey of repurposing a molecule originally developed against breast cancer to treat overgrowth syndromes: “From a single patient to a US FDA approved drug”.
💼 James Levine, President, Fondation Ipsen , discussed de-risking and funding strategies in rare diseases: “Patient associations are absolutely critical in rare diseases, but so are links with academia, industry, and regulatory bodies”.
🌟 Daria Julkowska, ERDERA coordinator, closed the event with a call to action: “Help us empower rare by making disease concrete and measurable”
Thank you to all our speakers and participants for making this event a success!
Read more about the event here: https://lnkd.in/dR-Z8DVX
#ERDERA #RareDiseases #Research #Innovation #Healthcare European Health and Digital Executive Agency (HaDEA)
