Coalition of Patient Advocacy Groups Webinar Series
The RDCRN’s Coalition of Patient Advocacy Groups creates resources for patients and patient advocacy groups to advance the cause of rare disease research and improve patient outcomes throughout the network. To date, they have hosted two webinar series, one on navigating rare disease clinical trials and another featuring a variety of resources related to rare disease advocacy work:
The RDCRN Coalition of Patient Advocacy Groups hosted a four-part webinar series entitled, “Navigating the World of Rare Disease Clinical Trials from the Patient Perspective.” Please view the archived recordings below:
An Introduction to Clinical Trials, 7-23-20
An introduction to clinical trials for patient advocacy groups, from recruiting patients to working with industry. Features Adam Hartman, MD, of the National Institute of Neurological Disorders and Stroke (NINDS).
Clinical Trials - Working with your Patient Community, 10-25-20
Working with Your Patient Community. Focused on the use and value of patient data, this webinar explores the various ways patient data can be collected, ways to educate patients, and how a patient advocacy organization can help bring an engaged and knowledgeable patient cohort to a trial.
Presenters include Eileen C. King, PhD, of Cincinnati Children's, Joshua M. Tarnoff of NephCure Kidney International, Tiina K. Urv, PhD, of NIH, and Kirsten Wheeden of the American Porphyria Foundation.
Working with Industry in the Conduct of Clinical Trials, 2-25-2021
This session will focus on the relationship between industry partners and patient advocacy groups. Discussion will take place on what types of assistance industry may ask of patient groups including developing the protocol; helping to recruit patients; helping to recruit clinic sites and using the resources of the patient groups for outreach. This session will also focus on questions to ask industry when entering into a partnership.
Working with the FDA in the Conduct of Clinical Trials, 9-29-21
Working with the FDA in the Conduct of Clinical Trials, featuring Kathleen "Katie" Donohue, MD, Director of the Division of Rare Diseases and Medical Genetics (DRDMG) within the U.S. Food and Drug Administration (FDA). This session focuses on how patient advocacy groups can engage meaningfully with the FDA along the path to a clinical trial. Topics include: How and when should a PAG be involved? What steps are critical for success? What are the pitfalls to avoid?
The RDCRN Coalition of Patient Advocacy Groups is hosting a webinar series entitled, “Rare Advocacy Resource Exchange.” This webinar series spotlights resources available to help patient advocacy groups accomplish their work. Please view the archived recordings below and check back periodically for new postings:
Research, Rare Disease Day & More: Catching Up with NORD
This one-hour webinar spotlights the National Organization for Rare Disorders (NORD) and resources available to patient advocacy groups to support their clinical trial readiness journey.
Getting to Know the EveryLife Foundation
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. Features Jamie Sullivan, MPH, senior director of Public Policy at the EveryLife Foundation. April 14, 2022.
Genetic Alliance "Don't Accept a Seat at the Table, Own the Table!"
So often, patients and patient advocacy groups are offered a seat at the table when research is being discussed. While that is great, it is not enough. Let’s own the table and set the agenda. Genetic Alliance offers many resources for disease and other communities. In this webinar, Sharon Terry, CEO, will describe these tools and how to access them.
The Chan Zuckerberg Initiative's Rare As One Project
The Rare As One Project, a core initiative of Chan Zuckerberg Initiative (CZI), supports patient-led organizations working to advance patient-driven research and improve the lives of people affected by rare disease. Join us to learn more about CZI’s work with the Rare As One Network.