Newsletter | April 10, 2024

04.10.24 -- Clinical Trial Insights Unlocked: Enhancing The Rare Disease Patient Journey

Optimizing The Rare Disease Patient Experience

Recruiting for clinical trials presents considerable challenges, such as stringent inclusion and exclusion criteria, inconvenient site locations, and time commitments. Pam Cusick of Rare Patient Voice shares insights into participant needs and overcoming hurdles.


Driving The Discussion: SYNGAP1 Foundation

Hear SYNGAP1 Foundation President, CEO and Founder Monica Weldon discuss the foundation’s work for patients with SYNGAP1 and related overlapping neurological disorders in this episode of Driving the Discussion with Scout.


Improving The Patient's Journey: An Unparalleled View Of Rare Disease

Dr. Charles Steward discusses the patient experience from his unique perspective as a rare disease dad and genome scientist. Watch now for a deeper understanding of patient experiences and optimizing research studies to serve this special patient population.


Empowering Patient Advocacy: Insights From Rare Patient Voice

In this webcast, Pam Cusick, Senior Vice President of Rare Patient Voice, delves into the intricate nuances of the patient experience, offering invaluable insights into enhancing patient education and fostering advocacy within the rare disease community.



Scout: Beyond The Numbers

Unearth several ways clinical trial participation can have a transformative impact on patients and their families.

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Going The Extra Mile To Enhance Every Experience

Explore how Patient Navigator can offer a higher level of specialized support, aiding patients and caregivers in navigating their trial participation.

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