NORD scientific symposium aims to advance rare disease research
June event to feature clinicians, researchers from various specialties
The National Organization for Rare Disorders (NORD) will host its first rare disease scientific symposium, in hopes of advancing rare disease research.
The NORD Rare Disease Scientific Symposium will be held June 2-3 in Washington. Online registration is available.
The symposium “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,” NORD said in an organization announcement. “It’s 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.”
Rare diseases like aromatic l-amino acid decarboxylase (AADC) deficiency pose unique challenges for researchers and clinicians who are hoping to develop treatments and improve patient care. Available data is often limited, and the rarity of these diseases means it’s difficult to run clinical trials that can generate statistically meaningful results.
Yet while each disease is rare, “many of these challenges are shared across disease areas,” NORD said.
‘Untapped opportunities’ for rare disease research collaboration
The idea behind the symposium is to get researchers from different specialties together, allowing experts to learn from each other’s experiences.
“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,” NORD said. “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.”
The symposium will feature topics such as how to run rigorous clinical trials when participant numbers are limited, cutting-edge approaches for collecting and analyzing rare disease data, and how industry, academia, and advocacy organizations can work cooperatively to advance research. There will also be opportunities for researchers to connect and network with each other.
NORD said it hopes the event will be “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,” the organization said.
NORD also hosts a Rare Diseases and Orphan Products Breakthrough Summit each October, which focuses on sharing patients’ lived experiences and highlighting how advocacy can help advance rare disease treatments.
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