News

Yellow Tongue Leads to Rare CAD Diagnosis

A young boy’s bright yellow tongue led doctors to a diagnosis of cold agglutinin disease (CAD), as described in a report of this rare case. The report, “An Icteric Tongue,” was published in The New England Journal of Medicine in the series Images in Clinical Medicine.

Register Now for Global Genes’ RARE Patient Advocacy Summit

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…

Plasma Exchange Therapy Treats Man With CAD and COVID-19

An elderly man with cold agglutinin disease (CAD) and COVID-19 was successfully treated with plasma exchange therapy and folic acid supplements. This case highlights how plasma exchange therapy can be a rapid and temporary solution to manage and stabilize CAD, its scientists wrote. The case report, “…

Advocates Lobby US Congress During Virtual Rare Disease Week

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…