Definition of keynote address1/4/2024 Through my career, both at FDA, and in my work in practice as a clinician, teacher and researcher, I’ve seen how this community has demonstrated the power of patient advocacy. The Strength and Success of the Rare Disease CommunityĪll of you collectively make up the rare disease community. They provide the most valuable resource for finding answers to how best to fight these diseases. And, most importantly, it involves patients and caregivers, who live with these diseases every day. This meeting includes scientific and medical researchers, representatives from both small and large companies, investors and potential investors, healthcare organizations, and government officials including FDA and NIH staff. This organization brings together so many different experts in rare disease from across the spectrum. NORD does a remarkable job marshaling the strengths of the rare disease community, effectively representing the needs and interests of patients, and advancing the goal of finding new opportunities, treatments, and cures.Īs I look out across this committed and engaged audience, it reinforces my understanding of how important strong and effective collaborations are to create success in the world of bioscience and therapeutics, especially where relatively small populations are affected. Thank you Peter for that kind introduction, and for your leadership of this great organization. “Critical Lessons about Rare Disease Drug Development” This speech is provided on the NORD website with permission from FDA.Ģ016 National Organization for Rare Disorders (NORD) Summit NORD, the leading independent nonprofit dedicated to helping people with rare diseases, hosts the 2-day event each year to bring all stakeholders together and identify new areas for collaboration and progress. The Summit was attended by 600 people from all areas of rare diseases. Robert Califf delivered the following keynote address today at NORD’s 2016 Rare Diseases and Orphan Products Breakthrough Summit. Stay Informed With NORD’s Email NewsletterįDA Commissioner Dr.Find a Rare Disease Patient Organization.Rare Disease Cures Accelerator (RDCA-DAP).Find Clinical Trials & Research Studies.Launching Registries & Natural History Studies.A Podcast For The Rare Disease Community.
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