Recommended Resources

Tools, Advocacy Platforms, and Additional Reading

DISCLAIMER: This isn’t intended to be a comprehensive list, but rather a curated set of standout resources tied directly to the themes we covered in the webinar.

We curated a shortlist of standout resources tied to the topics covered in the webinar—from practical tools and advocacy platforms to explainers and educational series.

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A Few Questions to Consider Asking Before Enrolling in a Trial 

• What are the risks—and how are they being monitored?

• Will I be compensated for my time or travel?

• Is there a placebo group, and how will I know if I’m in it?

• What happens if I want to leave the trial early?

• Will I get access to the treatment after the trial ends?

• Will I see the results—and will they be explained in plain language?

• How will my data be used, and who will have access to it?

Where to Find Trials

Whether you're exploring options for yourself, a loved one, or your community, here are trusted platforms to help you search:

• TrialJectory

• ResearchMatch

• ClinicalTrials.gov 

Many disease-specific organizations also curate trial hubs tailored to their communities. These often include lay summaries, navigation support, and direct links to enrolling studies to help you a potential fit.

NPLB Advocacy Highlights & Educational Content 

• A Letter to the FDA: No Patient Left Behind calls for FDA modernization and a shift toward patient-centered drug development.

• Inventing new medicines is a long climb: A quick visual journey through the uphill path of drug discovery—and why it’s worth the effort.

• Protect American Innovation: Why safeguarding medical innovation in the U.S. matters for patients today and tomorrow.

• A note of thanks to the FDA: A moment of gratitude for steps taken toward patient-centered progress.

• An NPLB Animation: Fighting for Affordable Medicines & Encouraging Innovation: How we can make medicines more affordable—without slowing down innovation.

Additional Resources

1. The Drug Development Process

2. About Research Participation

3. Human Research Volunteer Informational Videos

4. NIH Clinical Research Trials and You

5. Clinical Trial Resources

6. Real-World Evidence Classroom

7. Clinical Outcome Assessment (COA) Webinar Series

8. Patient Engagement Compensation and Contracting Toolbox

9. Education Center

10. Evaluating the Clinical Trial Option

11. Advocacy Education Program 

12. Clinical Trials

13. Clinical Trials Information for Patients and Caregivers

14. Rare Disease Drug Development: What Patients and Advocates Need to Know

    1. Part 1: Foundations and Pre-Clinical Research

    2. Part 2: Navigating Drug Review and Access

15. Guide to Patient Involvement in Rare Disease Therapy Development

16. Rare Advocacy Learning 

17. Rare Research Roadmap: The Road From Bench To Bedside

18. From Molecules to Medicine: How Patients Can Share Their Voices Throughout the Drug Development Process