The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
The hubbub percolating around the SpaceX launch last weekend reminded me of the role a committed and engaged support team plays in averting and staving off peril. In any successful outcome to a human hostage confrontation, two common strategies unfold. First,…
It makes sense that when healthcare providers work together, better outcomes can result for people with amyotrophic lateral sclerosis (ALS). A new study supports this idea by showing that coordinated networks of care for ALS can result in fewer trips to the hospital, less deterioration and an expanded lifespan. The study, titled…
