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Blog Posts

Category: Patient Advocacy and Engagement

The Cost of Convenience - Why Administrative Hurdles Should Never Block Newborn Screening

The Cost of Convenience: Why Administrative Hurdles Should Never Block Newborn Screening

In policy meetings and committee rooms across the country, newborn screening conditions are regularly scored, debated, and weighed. Leaders evaluate analytical validity, treatment efficacy, and system capacity. But every so...

Published September 2, 2026
Why Newborn Screening Matters - The Difference Between a Diagnosis and a Future

Why Newborn Screening Matters – The Difference Between a Diagnosis and a Future

Learn why newborn screening is one of the most important public health tools for rare disease diagnosis, early intervention, health equity, and improved patient outcomes....
Published August 21, 2026
How to Build Community Trust Before Recruitment Begins

How to Build Community Trust Before Recruitment Begins

Learn how sponsors can build trust with patient communities before recruitment begins and why early engagement strengthens long-term recruitment success....
Published August 20, 2026
My Voice Matters - Living with Duchenne Muscular Dystrophy

My Voice Matters: Living with Duchenne Muscular Dystrophy  

Devin Argall shares his experience living with Duchenne muscular dystrophy and how small assumptions can impact identity, inclusion, and respect....
Published August 12, 2026
The Role of Patient Storytelling in Clinical Development

The Role of Patient Storytelling in Clinical Development

Learn how patient storytelling can improve clinical development by revealing patient priorities, reducing trial barriers, strengthening advocacy engagement, and supporting more patient-centered study design....
Published August 12, 2026
How to Measure the Impact of Advocacy Engagement

How to Measure the Impact of Advocacy Engagement

Learn how to measure the impact of advocacy engagement using meaningful metrics that demonstrate influence on recruitment, retention, patient experience, trial readiness, and community trust....
Published August 7, 2026
How Patient Advisory Boards Can Improve Trial Outcomes

How Patient Advisory Boards Can Improve Trial Outcomes

Learn how patient advisory boards can improve clinical trial recruitment, retention, participant engagement, and trial outcomes by bringing patient insight into study planning....
Published August 6, 2026
Recruitment Creates Awareness - Patient Stories Create Confidence

Recruitment Creates Awareness – Patient Stories Create Confidence

Learn how patient story videos build trust, improve engagement, and help sponsors create stronger clinical trial recruitment strategies through authentic patient experiences....
Published August 4, 2026
Caregiver Burden Is a Clinical Trial Risk. - Why Are We Still Ignoring It

Caregiver Burden Is a Clinical Trial Risk: Why Are We Still Ignoring It?

Patients carry the diagnosis. Caregivers often carry the burden. Clinical trials often focus on reducing burden for patients. But in many therapeutic areas, especially rare disease, pediatric, neurology, and complex...

Published August 3, 2026
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