Rare Disease Advocates’ Relevance in Clinical Trial Design and the Consequences of Non-Inclusion
The stakes are extraordinarily high for both orphan drug developers and rare disease communities. Trials often fail to measure functional outcomes that reflect patients’ greatest unmet needs. Failure to identify outcome measures that capture what patients value most contribute to delays, or worse denials, to therapy. Industry-Advocacy partnerships are key to mitigating the risk of missing endpoints. Moving forward it is critical for Industry to adopt internal strategies to fill the empty chair at the table and allow Rare Disease Advocates (RDAs) to influence and support clinical trial design.
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ThinkGen was founded in 2010 and has had a successful history delivering actionable results that help clients thrive in competitive and complex markets. Our team brings together both market research expertise from the vendor side, and long-term marketing and sales experience from the client side.

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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.