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Empowered #patientchat: Rare Disease Advocacy with @RareCandace
March 4, 2016 @ 10:00 am - 11:00 am
We are thrilled that Intake.me Patient Advisory Board member Candace Lerman, will be joining our March 4th Empowered #patientchat. We’ll discuss what patients should know about recent rare disease advocacy efforts and how patients can get involved in health policy.
Candace was diagnosed with the rare disease Immune Thrombocytopenia (ITP) in 2014. She now advocates, educates and empowers other rare disease warriors through her RareCandace blog. Driven by her focus on legislative advocacy to bring change for the rare disease community, she is also currently attending law school.
Guiding our discussion will be the following Topic (T) Questions:
T1a: What were some of the activities surrounding #RareDiseaseDay 2016?T1b: How did you get involved with and/or support #RareDiseaseDay?T2a: What do patients and advocates need to know about the 21st Century Cures Act and the OPEN Act?T2b: How can the rare disease community benefit from the recently announced National Cancer Moonshot?T3: Where are some places rare disease patients can find others with their condition and find other rare disease advocates?T4: How can patients and families can get involved in influencing health policy? What are some ways to get started?T5: Let’s share. What are some of your patient advocacy actions and plans for this year?T6: What would you want others to know as they embark on a journey with rare disease?
Join us Friday, March 4th on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific / 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses! Click HERE to learn more about our Empowered #patientchat Series and how to participate.