News

February 22, 2021February 22, 2021

IL-17A Inhibitors Appear Effective in Treating AS, But Safety Needs Further Study

News

Medications that block the activity of the pro-inflammatory molecule interleukin-17A (IL-17A) can ease symptoms of ankylosing spondylitis (AS), but further research is needed to evaluate their safety, according to an ... Read more

February 18, 2021February 18, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

News, syndicated

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 15, 2021February 15, 2021

FDA Gives Thumb’s Up for Phase 2 Trial of Izokibep in AS Patients

News

The U.S. Food and Drug Administration (FDA) has cleared the start of a Phase 2 trial of izokibep in people with ankylosing spondylitis (AS), according to the therapy’s developers Affibody ... Read more

February 10, 2021February 11, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

News, syndicated

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 8, 2021February 8, 2021

High Pain Sensitivity in Patients Linked to Worse Clinical Outcomes

News

People with axial spondyloarthritis (axSpA) who had higher pain sensitivity were more likely to have worse clinical outcomes, according to a study that found chronic pain to be common in ... Read more

February 2, 2021February 2, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

News, syndicated

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

February 1, 2021February 1, 2021

Rinvoq Approved in EU for Two Types of Active Arthritis

News

AbbVie‘s Rinvoq (upadacitinib) has been approved in the European Union to treat active ankylosing spondylitis (AS) in adults who have responded inadequately to conventional therapy. The European Commission also approved ... Read more

January 26, 2021January 26, 2021

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

News, syndicated

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to ... Read more

January 25, 2021January 25, 2021

Quality of Life, Work Appear to Improve for Patients Taking Humira in China

News

Treatment with Humira (adalimumab) over six months significantly reduced symptoms and improved physical function, quality of life, and work productivity in ankylosing spondylitis (AS) patients, a Chinese study finds. The ... Read more

January 20, 2021January 20, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for ... Read more