News

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…

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

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…

Cleveland Hope Walk & 5K Run Set for Aug. 15, Benefits HDSA

The Cleveland Team Hope Walk & 5K Run is on tap for Aug. 15 to raise funds to help the Huntington’s Disease Society of America (HDSA) Northeast Ohio Chapter to improve the lives of Huntington’s disease (HD) patients and their families. The event, which seeks to raise $36,000…

Nominations Open for 2022 Eurordis Black Pearl Awards

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…

Preclinical Research Supports Pridopidine’s Therapeutic Potential

Treatment with pridopidine rescues the function of mitochondria — the cell’s powerhouses — boosting energy production, and reduces oxidative stress in models of Huntington’s disease, preclinical research shows. According to researchers, these findings support the therapeutic potential of pridopidine and its ongoing clinical development. Pridopidine is a small oral…