Updates
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As we packed into the car, our daughter, Coralynn, was excited. The holidays were firmly behind us, and today was the first day of ... Read more
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Seizure-causing Disorders Can Take Emotional Toll on Siblings
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. ... Read more -
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual ... Read more -
FDA Approves Generic of Banzel as Add-on Seizure Therapy
The U.S. Food and Drug Administration (FDA) has approved Lupin Limited’s generic medication, Rufinamide Oral Suspension, to be used as an add-on therapy to ... Read more -
Brian’s Letter to Santa
“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 ... Read more
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Fintepla Found to Safely Reduce LGS Seizure Frequency
Fintepla (fenfluramine) safely lowered the frequency of drop seizures — those where part or ... -
How to Decide the Next Step?
As I approach the reception desk, my heart is beating quickly. My forehead muscles ... -
New Hard-Stop Alert for Clinicians May Reduce Keto Diet Prescription Errors
Researchers have developed a new “hard-stop alert” that pops up when clinicians are trying ... -
Giving Thanks During Difficult Times
Thanksgiving just passed, and I’m back to work after a peaceful week off. On ... -
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
To empower and equip members of the rare disease community to engage state leaders ... -
Epidiolex’s Anti-Seizure Activity Not Affected by Clobazam, Review Study Finds
When given as an add-on therapy, Epidiolex (cannabidiol, CBD) can lower the frequency of ...
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