{"id":277885,"date":"2025-04-04T10:23:03","date_gmt":"2025-04-04T14:23:03","guid":{"rendered":"https:\/\/rarediseases.org\/?p=277885"},"modified":"2025-12-02T16:49:37","modified_gmt":"2025-12-02T21:49:37","slug":"nord-scientific-symposium","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-scientific-symposium\/","title":{"rendered":"A Deeper Look at the New NORD Rare Disease Scientific Symposium"},"content":{"rendered":"

Fostering collaboration to drive progress in rare disease research<\/span><\/span><\/h4>\n

By Tracey Sikora<\/span>, Vice President of Research & Clinical Programs<\/span><\/span><\/em><\/p>\n

Rare disease research is full of obstacles \u2014 small patient populations, limited data, and diseases that are often complex and poorly understood. These challenges can feel insurmountable when faced alone. But rare diseases often share common challenges, and progress accelerates when researchers, clinicians, and advocates work together. The upcoming <\/span>NORD\u00ae<\/sup> Rare Disease Scientific Symposium<\/span><\/a> is built on this idea: that collaboration is key to advancing science and improving lives.<\/span>\u00a0<\/span><\/p>\n

This June, NORD will host its first-ever Rare Disease Scientific Symposium in Washington, D.C. This gathering offers a rare opportunity to bring together clinicians, researchers, and thought leaders from across specialties to share ideas, address challenges, and celebrate breakthroughs, all in one room. It\u2019s a space for connecting the dots across disease areas and research methods, united by a shared mission to drive progress in rare disease science as a whole.<\/span>\u00a0<\/span><\/p>\n

\"One<\/p>\n

Advancing Science Through Collaboration<\/span><\/b>\u00a0<\/span><\/p>\n

With this event, NORD is expanding its legacy of convening the rare disease community. The <\/span>NORD\u00ae<\/sup> Rare Diseases and Orphan Products<\/span> Breakthrough Summit<\/span><\/a>, held each October, highlights the lived experiences of patients and the critical role of advocacy in drug and medical device development. The new Scientific Symposium extends that mission by turning the spotlight toward scientific discovery \u2014 bringing together researchers, medical professionals, industry experts, and patient organization representatives to advance research through collaboration. Together, these two events represent NORD\u2019s commitment to driving progress from every angle.<\/span>\u00a0<\/span><\/p>\n

The Scientific Symposium agenda, <\/span>which is available to view now<\/span><\/a>, spans two days of sessions on innovative clinical trial designs, real-world data applications, global trial coordination, and managing collaborative research networks. Attendees will learn from experienced experts \u2014 and share their own insights \u2014 about how to approach clinical trials for disorders with highly variable presentation, how to include pediatric populations earlier, and how patient data can help generate hypotheses for groundbreaking new research studies.<\/span>\u00a0<\/span><\/p>\n

\"A<\/p>\n

Why This Symposium, and Why Now?<\/span><\/b>\u00a0<\/span><\/p>\n

Rare disease research is uniquely challenging. Trials may be difficult to enroll. Patient populations are small and geographically dispersed. Data may be limited. Yet many of these challenges are shared across disease areas, whether you\u2019re studying a rare metabolic disorder or a genetic neurological condition.\u202fWhen researchers operate in silos, they may miss out on opportunities to learn from each other\u2019s work \u2014 what succeeded, what failed, and what might work better next time.\u00a0<\/span>\u00a0<\/span><\/p>\n

The Scientific Symposium is built on the belief that bringing researchers together to share their experiences can help the entire field move faster, smarter, and more efficiently. There are many untapped opportunities for cross-disease collaboration. By fostering a space for open dialogue, we hope to spark new ideas for collaborative research that crosses traditional boundaries.<\/span>\u00a0<\/span><\/p>\n

\"An<\/p>\n

Building a More Connected Research Ecosystem<\/span><\/b>\u00a0<\/span><\/p>\n

At NORD, we believe in the power of collaboration and connection. Our <\/span>NORD\u00ae<\/sup> <\/span>Rare Disease Centers of Excellence<\/span><\/a> program is already working to unite leading institutions in rare disease care and research. The Scientific Symposium is a natural extension of that work \u2014 a way to give our Centers and the broader rare disease research community a platform to connect, share, and grow together.<\/span>\u00a0<\/span><\/p>\n

We envision this event as a catalyst for stronger research networks, new partnerships, and a shared commitment to tackling the toughest challenges in rare disease research. We want researchers and clinicians to leave this meeting not only with new knowledge, but also with new collaborators and new energy for the work ahead.<\/span>\u00a0<\/span><\/p>\n

\"Someone<\/p>\n

Join Us This June<\/span><\/b>\u00a0<\/span><\/p>\n

The Rare Disease Scientific Symposium takes place June 2\u20133, 2025, in Washington, D.C. Whether you\u2019re a clinician, a scientist, or part of the medical affairs and R&D community, we invite you to be part of this inaugural event. Registration is now open with early bird pricing available through April 30. <\/span>Explore the agenda and register here.<\/span><\/a>\u00a0<\/span><\/p>\n

Alone we are rare, but together, we drive scientific discovery. Progress in rare disease research doesn\u2019t happen in isolation \u2014 it happens when knowledge is shared and efforts are united. The future moves faster when we move together.<\/span>\u00a0<\/span><\/p>\n

\"Tracey<\/p>\n

Tracey Sikora is the Vice President of Research & Clinical Programs at the National Organization for Rare Disorders (NORD<\/em>\u00ae<\/sup>), where she oversees NORD’s research and medical affairs departments. Before joining NORD, she co-founded the nonprofit organization Every Cure, dedicated to unlocking the potential of drug repurposing for rare disorders.<\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Fostering collaboration to drive progress in rare disease research By Tracey Sikora, Vice President of Research & Clinical Programs Rare disease research is full of obstacles \u2014 small patient populations, … <\/p>\n

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