Author’s note: The COVID-19 crisis has already lasted several months. The reality is that we don’t know how this will go. But as a community, my opinion is that we need to be ready. We need to be knowledgeable. This column will focus on some work we have done to…
While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…
FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…
The Muscular Dystrophy Association (MDA) has formed a Medical Advisory Team to provide guidance related to research and clinical care in muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular disorders. The team consists of three physicians, all experts in these conditions and leading clinicians at an…
Because of the global COVID-19 pandemic, Italfarmaco has paused enrollment of boys with Duchenne muscular dystrophy (DMD) in a Phase 3 trial of its investigational treatment givinostat, the company said in a recent webinar hosted by Parent Project Muscular Dystrophy. Although treatment of current…
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…
Netflix’s new documentary “Crip Camp” transports viewers to the peak era of peace-preaching hippies and civil rights activists. But amid these revolutions, another minority group struggled to find belonging: the disability community. To further their cause, Camp Jened’s hippie staff dedicated themselves to treating people with disabilities…
Traci and Tony Rico of Cardiff-by-the-Sea, California, juggle more than their share of family health issues. Their son, Tanner, has Duchenne muscular dystrophy, and their daughter, Pria, has recurrent respiratory papillomatosis (RPP) — a rare genetic condition that has led to 97 surgeries to remove tumors in her larynx…
COVID-19 has forced families around the world to stay indoors and spend a lot more time together. This will not change for quite a while, especially for those of us with chronic conditions who need extra protection. As I wrote in my previous column,…
None of us have lived through something like what we are going through today. Some have attempted to equate it with other historical events. But there is a uniqueness to this pandemic. As far as I’m concerned, these comparisons aren’t helpful. We live in a unique period of technological advancement.
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