Taking Time to Acknowledge Our Efforts as Parents and Caregivers
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 ... Read more
Updates
-
-
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
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 ... Read more -
Brian Is a Happy Little Man
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 ... Read more -
Pandemic Won’t Stop Rare Disease Day on Feb. 28
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 ... Read more -
I’m Ready to Embrace My Emotions as an LGS Caregiver
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 ... Read more
-
International Epilepsy Day Shines Spotlight on Brain Disorder Affecting Millions
International Epilepsy Day (IED), falling on Feb. 8 this year, calls attention to the needs ... -
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to ... -
Jazz Acquires GW Pharma and Epidiolex, Other Potential Cannabinoids
Jazz Pharmaceuticals announced the signing of a definitive agreement for it to acquire GW Pharmaceuticals and holdings ... -
Study Reveals Molecular Details of Epidiolex Action
Cannabidiol (CBD) — the active ingredient in Epidiolex — was found to bind to and ... -
This Is Why I Had to Sign Off
It’s good to be back and writing again. My last column was posted over a ... -
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide ...
Subscribe to our mailing list
Get regular updates delivered to your email box.
Thanks! Please check your email for a confirmation email.