Published August 16, 2021 by NORD
Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive genetic disorder that is characterized by the accumulation of fats (lipids) called sulfatides …
Read morePublished July 15, 2021 by NORD
Washington, DC – The National Organization for Rare Disorders® (NORD) was named an Official Charity Partner for the 2021 TCS New York City Marathon, taking place on November 7. This year serves …
Continue reading “NORD Named an Official Charity Partner of the 2021 TCS New York City Marathon”
Read morePublished June 17, 2021 by NORD
Washington, DC, June 17, 2021—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD) regarding today’s US Supreme Court decision …
Continue reading “NORD Issues Statement on California v. Texas Ruling”
Read morePublished May 27, 2021 by NORD
Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced …
Continue reading “NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer”
Read morePublished May 18, 2021 by NORD
Washington, DC, May 18, 2021—The National Organization for Rare Disorders (NORD®) announced that during a recent Board of Directors meeting, Kay Holcombe was elected as Chair and Dennis Jackman joined …
Continue reading “NORD Announces New Board Chair and New Member of its Board of Directors”
Read morePublished May 6, 2021 by NORD
Bethesda, MD, May 6, 2021—The Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD)® today launched the largest-ever study to research Paroxysmal Nocturnal Hemoglobinuria …
Read morePublished April 22, 2021 by NORD
Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD®) have announced a partnership to develop global data standards for rare …
Continue reading “CDISC and NORD Partner to Develop Data Standards for Rare Diseases”
Read morePublished March 25, 2021 by NORD
Washington, DC, March 25, 2021—The National Organization for Rare Disorders (NORD®) today announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases. NORD commissioned Avalere to conduct the analysis to examine if laws and …
Read morePublished March 16, 2021 by NORD
Washington, DC, March 16, 2021—The National Organization for Rare Disorders (NORD)®, together with KrabbeConnect, The Legacy of Angels Foundation, Partners for Krabbe Research, Hunter’s Hope and with additional support from …
Read morePublished March 4, 2021 by NORD
Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account …
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