News

CDKL5 PFDD Webinar

Join us on Tuesday, August 6, at 8:00 pm ET for a webinar to learn more about our upcoming CDKL5 Deficiency Patient-Focused Drug Development (PFDD) meeting. On November 1, 2019, IFCR and the LouLou foundation will co-sponsor this externally-led meeting for CDD. This is a once-in-a-lifetime opportunity for caretakers to share the patient voice with a variety of stakeholders interested in developing treatments for CDD.

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2019 NORD Living Rare Forum

Karen Utley was honored to participate in the National Organization of Rare Diseases’ NORD Living Rare Forum in Houston, Texas. Several researchers stopped at the table and talked with her …

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CDKL5 Fenfluramine Study

NOW OPEN!

CDKL5 Fenfluramine Study

This study will be enrolling 10 patients, ages 2-18 years old, with a confirmed genetic/clinical diagnosis of CDKL5 Deficiency Disorder (CDD) in an open label trial of fenfluramine for seizure control. Patients will be titrated over 14 days to a dose of ZX008 0.8 mg/kg/day (maximum dose 30 mg/d).

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