Archive for May 2026
Update on Opakalim – Kv7 activator
Biohaven shared new data this week on their experimental epilepsy medicine opakalim, including an update involving a child with KCNQ2-DEE. In the six-month follow-up, the company reported that the child…
Read MoreGuest Blog – Why We Drove 3 Hours to Donate Samples
Why We Drove 3 Hours to Donate Samples (And Why You Should Too!) When you are navigating a rare disease journey, you quickly learn that every drop of data counts.…
Read MoreQ2 Quick Note #15: Rare Epilepsy ICD-10 Codes are Not Used Consistently
Excerpt A new study reveals that many people living with rare genetic epilepsies receive generic ICD-10 codes, even when syndrome-specific codes exist. What It’s About Researchers at UT Health Houston…
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