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… Read More
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), taking place Friday, September 20. Scholarships are available to… Read More
Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders
Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit… Read More
Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.
People living with rare… Read More
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in… Read More
