The Effects of Guilt on My Body and Mind

Welcome back to “Hidden Truths.” This week I wanted to move away from the style of my first and second columns and discuss how one of the most basic emotions relates to muscular dystrophy (MD) and other chronic illnesses. Guilt occurs when a person feels regret or shame in response…

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

Resolaris Improves Muscle Strength, Quality of Life in FSHD Patients, Study Finds

Resolaris, a protein therapy developed for rare muscle diseases by aTyr Pharma, improved muscle strength and quality of life in a small study of patients with early onset facioscapulohumeral muscular dystrophy (FSHD). These findings, as well as others regarding the effect of Resolaris in patients with limb girdle muscular…