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

September 20, 2019 @ 9:30 am - 3:30 pm

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, taking place Friday, September 20, 2019

If you are a patient, family member or caregiver affected by pyruvate kinase deficiency, 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 with currently available treatments. Patients’ experiences provide valuable insight for the US Food and Drug Administration (FDA) and other key stakeholders, including researchers, medical product developers and health care providers. 

For more information on pyruvate kinase deficiency and the importance of this meeting, please click here.


Registration is required in order to attend this meeting. Click here to register.

Hotel Room Block:

To book your group rate for NORD’s Patient-Focused Drug Development Meeting, click here.


Download Agenda PDF

Meeting Resources

Voice of the Patient Report – Pyruvate Kinase Deficiency


College Park Marriott Hotel & Conference Center  
3501 University Blvd E.
Hyattsville, MD 20783 United States
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