This collection of real-world insights is informed by scientifically validated, patient-reported data collected by NORD’s registry community.
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NORD developed key drug pricing principles with the needs of the rare disease community in mind.
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NORD Announces Four New Board Members
“Our four newest Board members each embody the spirit of collaboration central to NORD’s mission and bring experience, talent and energy to the table.”
Rare Caregiver Respite: Leah’s Story
“Although I love my son and would not trade our lives for anything, every once in a while it is important to get away and do something ‘normal.'”
Rare Caregiver Respite: Debra’s Story
“It was such a blessing to know that my Mom was being well taken care of while I was away. Thank you so much NORD for providing this opportunity for me and other deserving caregivers!”
Upcoming Externally-Led Patient Focused Drug Development Meeting for PKD Community
“NORD and the Foundation for Rare Blood Diseases (SZB) invite you to register for an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD)”