Forging New Routines After Sudden Changes
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
Updates
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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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