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AAMDSIF and NORD Launch New Natural History Study of Paroxysmal Nocturnal Hemoglobinuria (PNH)
“ The worldwide registry will advance understanding of and spur innovation in treating PNH”
New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey
“About 1 in 13 people are currently living with an undiagnosed condition.”
CDISC and NORD Partner to Develop Data Standards for Rare Diseases
“Therapeutic Area User Guides provide examples and guidance on implementing CDISC standards so that data can be structured effectively and easily analyzed.”
NORD Expands Gene Therapy Offerings Through New Online Resources
“NORD prioritizes gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions”
