Cold Agglutinin News

September 17, 2021September 17, 2021

New Institute Aims to Leave No Rare Disease Patient Behind

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest ... Read more

September 10, 2021September 10, 2021

Group Focuses on Rare Disease Clinical Trial Participation

Cold Agglutinin News

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running ... Read more

September 10, 2021September 10, 2021

COVID-19 May Trigger CAD in Children

Cold Agglutinin News, COVID-19 News

SARS-CoV-2, the virus that causes COVID-19, may trigger cold agglutinin disease (CAD) in children, a case report suggests. The report, “Autoimmune hemolytic anemia in children with COVID-19,” was published in ... Read more

September 3, 2021September 3, 2021

‘Running for Rare’: NORD a Charity Partner of 2021 NYC Marathon

Cold Agglutinin News

The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both ... Read more

August 27, 2021August 27, 2021

Secondary CAD Found to Be Cause of Anemia in Lung Cancer Patient

Cold Agglutinin News, COVID-19 News

Cold agglutinin disease (CAD) and not the cancer therapy Keytruda (pembrolizumab) was found to be the cause of anemia in a 64-year-old man with lung cancer, according to a recent ... Read more

August 27, 2021August 27, 2021

‘Not Alone in the Dark’: New Guide for, by Caregivers of Children With Rare Diseases

Cold Agglutinin News

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The ... Read more

August 20, 2021August 20, 2021

Yellow Tongue Leads to Rare CAD Diagnosis

Cold Agglutinin News

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,” ... Read more

August 19, 2021August 19, 2021

Register Now for Global Genes’ RARE Patient Advocacy Summit

Cold Agglutinin News

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 ... Read more

August 13, 2021August 13, 2021

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

Cold Agglutinin News, COVID-19 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 ... Read more

August 6, 2021August 6, 2021

Plasma Exchange Therapy Treats Man With CAD and COVID-19

Cold Agglutinin News, COVID-19 News

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 ... Read more

August 6, 2021August 6, 2021

Advocates Lobby US Congress During Virtual Rare Disease Week

Cold Agglutinin News, COVID-19 News

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 ... Read more

July 30, 2021July 30, 2021

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

Cold Agglutinin News

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 ... Read more

July 30, 2021July 30, 2021

CAD Patients Show ‘High Disease Burden’ Based on Healthcare Use

Cold Agglutinin News

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 ... Read more

July 23, 2021July 23, 2021

Case Report: Avoiding Unneeded Transfusions Key in Patient Care

Cold Agglutinin News

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 ... Read more

July 23, 2021July 23, 2021

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

Cold Agglutinin News

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 ... Read more