NORD invites you to a virtual externally-led Patient-Focused Drug Development (EL-PFDD) meeting on Krabbe disease, taking place Thursday, October 29, 2020.
If you are a patient, family member or caregiver affected by Krabbe disease, 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.
Registration is required in order to attend this virtual meeting. Click here to register.
Patients and caregivers interested in speaking opportunities during the meeting should complete this form by Friday, August 7, 2020. The Patient-Focused Drug Development initiative aims to obtain individual perspectives on specific diseases and their treatments.