News

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

African Americans with interstitial lung disease (ILD) caused by scleroderma (SSc-ILD) had largely similar outcomes compared to non‐African Americans in two clinical trials testing immunosuppressive therapies, according to an analysis.  Because all trial participants received the same…

People with scleroderma who were treated with Tracleer (bosentan) to prevent digital ulcers — open sores on the fingers or toes — saw their risk of developing pulmonary hypertension (PH) lowered almost four times, a study found. The study, “…

Osteopontin, a protein known to play a role in tissue regeneration, immune system regulation, and bone remodeling, may be driving scarring of lung tissue in people with scleroderma associated with interstitial lung disease (SSc-ILD), a study suggests. High levels of osteopontin — produced by a subtype of immune cells…

People with scleroderma are at a higher risk of developing diseases that affect the heart or blood vessels — commonly known as cardiovascular diseases — compared with those who do not have the autoimmune disorder, a review study has found. Physicians caring for scleroderma patients should keep this risk…

More than 40% of scleroderma patients are diagnosed with osteopenia (loss of bone mass) or osteoporosis (weak, brittle bones) and the risk is increased by time from first symptom and with the use of non-corticosteroid…

Brain cancer associated with a viral infection was found in two people with scleroderma after doses of their immunosuppressive therapies were reduced, a case series reports.  The findings suggest that either immunosuppression reduced viral clearance, leading to cancer, or removing such therapies…

The U. S. Food and Drug Administration (FDA) has granted orphan drug designation to ACE-1334, an investigational therapy that aims to ease scarring in the lungs of people with scleroderma. Acceleron Pharma, the company developing ACE-1334, plans to launch a Phase 1b/2 clinical trial next year,…

A new documentary, “Beyond Breathless,” will showcase the journey of those affected by interstitial lung disease (ILD) through the real experiences of people living with rare lung diseases, their loved ones, and healthcare professionals. The documentary, by pharmaceutical company Boehringer Ingelheim, will premier at noon EST Saturday (Dec. 5) on…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…