Updates
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As humans, and especially as caregivers, we do not give ourselves enough credit. It’s a widely ... Read more
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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 ... Read more -
Brian Is a Happy Little Man
Little Brian is awesome. As I take this time to reflect on the totality of the ... 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 ... 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 ... Read more
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International Epilepsy Day Shines Spotlight on Brain Disorder Affecting Millions
International Epilepsy Day (IED), falling on ... -
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year ... -
Jazz Acquires GW Pharma and Epidiolex, Other Potential Cannabinoids
Jazz Pharmaceuticals announced the signing of a ... -
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COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
The two COVID-19 vaccines that recently ...
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