HLTH Community Insider, Boston: Stripes of Strength: Uniting for Rare Diseases with Alexion

This meeting is focused on rare disease. We encourage all community members to apply, though spaces will first be given to those working in this specific field. 

Furthermore, pharmaceutical companies often work independently to address the complexities of rare diseases. While this siloed approach has led to some significant advancements, it inherently limits the scope of potential solutions. By pooling data and resources, companies can gain a more comprehensive understanding of rare diseases, leading to more effective and timely treatments. Federated data sharing—where data is shared across different entities without transferring it to a centralized repository—emerges as a promising solution to this predicament.

The adoption of federated data sharing in the realm of rare diseases is nascent, hindered in part by technical obstacles related to data standardization and interoperability, as well as ethical and legal considerations around data privacy and consent.

Is Collaboration Possible?

Yes, collaboration is not only possible but necessary. Successful examples of industry collaboration in other fields, such as the open sharing of pre-competitive data in oncology, demonstrate that with the right frameworks, collaboration can lead to significant advancements. The rare disease community can draw on these examples to build their collaborative efforts.

Why is Alexion hosting this Insider?

Alexion is committed to convening stakeholders from across the rare disease ecosystem (biopharma, digital health etc) to galvanize industry-wide collaboration. By bringing together key players from various sectors, the Insider event aims to foster dialogue, encourage the exchange of ideas, and stimulate the desire for collaboration.