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NORD

July 2019

NORD Webinar: Self-Advocacy and Care Coordination

July 24 @ 2:00 pm - 3:00 pm

Do you want to learn how to better advocate for yourself in a healthcare setting? Are you curious how care coordination fits into a successful treatment plan? We will cover these topics and more in a free webinar on July 24 at 2:00pm EDT. Join us as Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF), explains self-advocacy and how you can develop skills to become a more effective self-advocate. Then, NORD’s own Jill Pollander, Director of…

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September 2019

Pyruvate Kinase Deficiency (PKD): Externally-Led Patient Focused Drug Development Meeting

September 20 @ 9:30 am - 3:30 pm
College Park Marriott Hotel & Conference Center  , 3501 University Blvd E.
Hyattsville, MD 20783 United States
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NORD and the Foundation for Rare Blood Diseases (SZB) invite you to an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, September 20.  If you are a patient, family member or caregiver affected by PKD, this is an important opportunity to have your voice heard.  EL-PFDD meetings provide an opportunity for patients, their families and caregivers to share critical information about the impact of their disease on their daily lives and their experiences…

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