PILLAR 1: Disease Education (ex. The Expert Patient Series)PILLAR 2: Community-Based Organization/Certified Community Advocate Training & Best PracticesPILLAR 3: Research, Legislation & PolicyPILLAR 4: Warrior/Caregiver Life Skills The FDA Patient Engagement series is presented as part of both pillar 2 and pillar 3 and is open to the public. Please use this form to register for the series. After registration is complete you will receive the link to logon for each class. General participants may select any (or all) of the three classes to attend. Participants enrolled in Warrior University must attend all three session in order to receive credit towards certification.
Classes will be held on Tuesdays, beginning April 2nd at 7 PM EST.
April 2 - WHY GET INVOLVED WITH THE FDA? - 7 PM ESTLearn about the FDA and how it incorporates patient input and the role of the patient voice.Regular and sustained patient advocacy with the FDA is important because:• Helps FDA understand the impact of sickle cell• Used in the approval decisions to balance benefits and risks of new therapies• FDA wants and solicits patient input into their processes.
April 9 - BUILDING YOUR ADVOCACY RESUME - 7 PM ESTThe Advocacy Resume is an efficient way to professionally catalog and share the work that you do in the sickle cell community. Workshop participants will learn how to create an advocacy resume and will work with others to develop their own.
April 16 - HOW TO GET INVOLVED WITH THE FDA - 7 PM ESTLearn how to get involved with FDA programs and practical engagement tips.There are many ways the FDA solicits input from patients including product specific and context setting opportunities. Key ways to get involved include: acting as a patient representative, participating in listening sessions and focus group sessions. Helpful tips make it easier to take next steps and engage with the FDA.
This series is supported by Global Blood Therapeutics.