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November 30, 2017

TOPIC: Featured News, Medical

NORD Publishes Information for Physicians and Patients on Three Rare Diseases

Posted at November 11, 2017 09:56 am by Christina Jensen

Washington DC, Thursday, November 30 — The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three rare medical conditions: hepatocellular carcinoma (HCC), acute myeloid leukemia (AML) and pigmented villonodular synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and their… Read More

November 13, 2017

TOPIC: Featured News, Medical, Research

NORD Publishes New Educational Resource on Li-Fraumeni Syndrome

Posted at November 11, 2017 12:21 pm by Christina Jensen

Washington, D.C., November 13, 2017—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 Li-Fraumeni Syndrome. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

October 5, 2017

TOPIC: Medical, Research

NORD Publishes New Report on RYR-1 Related Diseases

Posted at October 10, 2017 03:11 pm by Christina Jensen

Washington, D.C., October 5, 2017—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 RYR-1-Related Diseases. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

September 12, 2017

TOPIC: Featured News, Medical, Patients & Members, Press Releases

NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Posted at September 9, 2017 09:05 am by Christina Jensen

Washington, D.C., September 15, 2017—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 Shprintzen Goldberg Syndrome (SGS). This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases,… Read More

August 31, 2017

TOPIC: Events, Featured News, Industry, Medical, Patients & Members, Research

FDA Announces First Gene Therapy in U.S.

Posted at August 8, 2017 12:39 pm by Mary Dunkle

In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood and bone marrow known as acute lymphoblastic leukemia (ALL).

Approximately… Read More