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…
News
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…
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, “…
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…
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…
People with cold agglutinin disease (CAD) use more healthcare resources than people without the disorder, both before and after a diagnosis, according to a recent Danish study. Study findings indicated that six months before a CAD diagnosis, patients were three times more likely to be admitted to a…
Accurately diagnosing cold agglutinin disease (CAD) and managing anemia without unnecessary blood transfusions are key patient care aspects of the disorder that should be considered by physicians, a recent case study highlighted. Not giving unneeded blood can help health care providers “avert … secondary injury caused by adverse reactions…
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
Vaccination for SARS-CoV-2, the virus that causes COVID-19, might have triggered cold agglutinin disease (CAD) in a 45-year-old woman, a case from Saudi Arabia reports. Her symptoms appeared three days after receiving the first dose of the Pfizer-BioNTech COVID-19 vaccine. According to the study, the patient achieved complete remission…
Recent Posts
- Oral therapy iptacopan eases anemia in CAD patients: Small trial
- When living with CAD, even a short trip can be a nightmare
- Real-world study confirms long-term safety of Enjaymo for CAD
- After months of fatigue, feeling better is what I want for Christmas
- Man’s case shows bacterial lung infection can ‘provoke’ clots, CAD
- Living with cold agglutinin disease involves cruel curveballs
- Gastric lymphoma found to be hidden cause of refractory CAD
- New CAD treatments, like reading progress, prove growth is possible
- ANX1502 proof-of-concept trial to wrap up next year, Annexon says
- What if Sadie Hawkins Day made me the doctor?