News

B-Cell Depletion Therapy May Be Effective

Intensified B-cell depletion therapy (IBCDT) — administering immunosuppressants to lower the number of antibody-producing immune B-cells — may be a promising strategy to help people with scleroderma manage their condition, a study shows. IBCDT may be particularly helpful for those with extensive skin involvement and severe…

Digital Ulcers, Raynaud’s and GI Symptoms Can Diminish Life Quality

Three factors —  the presence of digital ulcers, Raynaud’s phenomenon, and gastrointestinal (GI) symptoms — appear to predict a worsening over time in life quality for people with systemic scleroderma (SSc), a study in nearly 500 patients shows. In addition, pulmonary arterial hypertension (PAH) was found to significantly contribute…

NORD’s Caregiver Respite Program Continues Through Pandemic

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 Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

Finger Sweating Tests May Help Diagnose Scleroderma

Tests that measure finger sweating levels may be useful diagnostic tools to help physicians identify people with scleroderma, a pilot study has found. Future studies enrolling a larger number of patients are needed to confirm the utility of these tests, researchers said. The study, “Finger sweating…

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating  diagnoses, and improving patient care and treatment, is now in practice. This  framework, signed by all four countries take make up the U.K. — England, Scotland, Wales and Northern Ireland — builds on the success…