Published March 8, 2019 by NORD
Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry. NORD’s IAMRARE Registry Program was built …
Continue reading “NORD IAMRARE APS Type 1 Patient Registry Launched”
Read morePublished January 16, 2019 by NORD
Get ready to #ShowYourStripes for Rare Disease Day, the biggest day of the year for the rare disease community.
Read morePublished January 3, 2019 by NORD
Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as …
Read morePublished November 29, 2018 by NORD
Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on …
Continue reading “NORD Publishes Report on Post-Transplant Lymphoproliferative Disease”
Read morePublished October 18, 2018 by NORD
Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the …
Continue reading “Updated Study Analyzes Use and Cost of Orphan Drugs”
Read morePublished October 11, 2018 by NORD
NORD’s Director of State Policy Tim Boyd participated in a press briefing on copay accumulators yesterday, which was followed by the issuance of the following press release that includes links …
Read morePublished October 9, 2018 by NORD
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the …
Continue reading “NORD IAMRARE HI Global Registry Launched”
Read morePublished October 3, 2018 by NORD
Listen to recent comments from Janet Woodcock, Director CDER, FDA on NORD and the importance of natural history registries for rare disorders.
Read morePublished September 25, 2018 by NORD
Washington, D.C., September 25, 2018 – The National Organization for Rare Disorders (NORD) announced today it is enhancing its Rare Disease Database which serves as a valuable source of information …
Read morePublished September 11, 2018 by NORD
Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten …
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.