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CDKL5 Canada

Description

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. To pursue research into finding a cure and treatments for CDKL5 disorder and to raise public awareness of the disorder, while providing support to those affected by CDKL5 in Canada. CDKL5 is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene. The disease is hallmarked by early-onset, intractable epilepsy and neurodevelopmental delay. Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.

Services Offered
Rare disease advocacy alliance member listing pending review.

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Author Info

matt.toresco@archo.io

Member since 8 months ago
  • matt.toresco@archo.io
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