As humans, and especially as caregivers, we do not give ourselves enough credit. It’s a widely accepted expectation that we should always strive to do better. I don’t necessarily disagree with that sentiment, as…
Community Perspectives
Little Brian is awesome. As I take this time to reflect on the totality of the life that currently exists for me, I struggle to maintain a positive outlook. Lennox-Gastaut syndrome (LGS) has completely upended…
No matter how cliché it sounds, if there’s anything I can get across as a Lennox-Gastaut syndrome (LGS) caregiver, it’s that the experience is truly an emotional roller coaster. At the time of writing my…
It’s good to be back and writing again. My last column was posted over a month ago, before the winter holidays. I wish I could say the entirety of my time away was spent in…
As we packed into the car, our daughter, Coralynn, was excited. The holidays were firmly behind us, and today was the first day of the local recreation center’s basketball season. Coralynn hadn’t played on…
“What should I get Brian for Christmas?” It’s a question I get every year, but as the years have passed, it’s become increasingly difficult to answer. I used to be able to say airplane…
Latest News
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…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and…
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune…
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…
Having a sibling with Lennox-Gastaut syndrome and other seizure-causing conditions can take a psychological toll that is not always recognized by parents, research shows. The findings were published in Epilepsy and Behavior, in the study…
