Breaking down barriers in rare disease research: advantages and obstacles in data sharing

Available on Demand Why is there a barrier to data sharing in rare disease research? With approximately 7,000 rare diseases around the globe affecting close to 300 million people — and

government initiatives focusing on treatment and understanding for these diseases — there are still obstacles to the distribution of clinical trial data across rare disease studies. Again,

the question is why? With rare disease foundations, advocacy groups, and communities across the world working together to try to realize potential cures for each and every disease, shouldn’t

crucial data be readily available? This February, in support of Rare Disease Day, our panel of expert rare disease advocates and industry experts will discuss the importance of breaking

down barriers and promoting global data sharing across all rare diseases. We will shine a light on the benefits of data sharing as well as the global challenges to making this crucial

information accessible. Our esteemed panel will discuss: • The Advantages of Data Sharing Across Families and Foundations • Identifying and Breaking Through Barriers — From Siloing to Global

Regulatory Obstacles • Working Out Differences to Build Collaboration • Data Sharing Strategies for 2022 and Beyond SPEAKERS: MIKE GRAGLIA, Founder and Managing Director, SYNGAP RESEARCH

FUND, INC. DEVEN MCGRAW, Lead, Data Stewardship and Data Sharing for the Ciitizen platform, INVITAE CHARLENE SON RIGBY, CEO, RARE-X JACOB DONOGHUE, MD, PHD, CEO and Co-Founder, BEACON

BIOSIGNALS, INC.