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Box 469 Clarksburg PO Clarksburg ON, N0H 1J0

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      • Alex Connolly
      • Chase Julian Paul Charles
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      • Romane Leluc
      • Sybille Robert
      • Tia Staley
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    • Research Grant Opportunities
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    • June is CDKL5 Awareness Month
    • Purple Day
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    • CDKL5 RawTalk
  • About Us
    • Mission Statement
    • Diversity and Inclusion Statement
    • Board of Directors
    • Annual General Meeting
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    • Host a Fundraiser
    • Coast to Coast for CDKL5 
    • FundScrip
    • Jakob’s Memorial Campaign
    • Mabel’s Labels
    • Past Fundraising Initiatives
    • CDKL5 Canada Walk for a Cure
  • Contact Us

DONATE TODAY!

Useful Links

You are here:
  1. Home
  2. Family Resources
  3. Useful Links
CDKL5 Supporting Organizations:

LouLou Foundation

CDKL5 Alliance  

Rare Disease Networks and Genetic Support
Canadian Organization for Rare Disorders (CORD)
Regroupement québécois des maladies orphelines 
Orphanet   

Epilepsy
Epilepsy Canada  
Canadian Epilepsy Alliance 
Epilepsy Ontario 
SUDEP Aware 

Rett Syndrome
Ontario Rett Syndrome Association (ORSA)
International Rett Syndrome Association (IRSF)  

Autism
Autism Canada 
Geneva Centre for Autism

CDKL5 Canada is a registered charitable organization, dedicated to finding a cure for CDKL5 disorder.

Registered Charity number: 821379930RR0001

Contact info

Call us

+1-705-888-3213

Email

[email protected]

Location

CDKL5 Canada PO Box 469 Clarksburg ON, N0H 1J0

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Menu

  • Home
  • CDKL5
  • For Families
    • Quarterly Newsletter
    • CDKL5 Parent Handbook
    • Conference Recordings
    • Link Canada
    • Membership
    • Resources
    • FAQ
    • Support
    • Useful Links
    • Stories from families living with CDKL5
      • Alex Connolly
      • Chase Julian Paul Charles
      • Desirae Jardine
      • Eleanor May Newey
      • Gracie Spence
      • Julia and Maya Clark
      • Romane Leluc
      • Sybille Robert
      • Tia Staley
    • Clinics
  • Research
    • Research Grant Opportunities
    • CDKL5 International Registry
    • Clinical Trials
    • Scientific Advisory Committee
  • Awareness
    • June is CDKL5 Awareness Month
    • Purple Day
    • Rare Disease Day
    • CDKL5 RawTalk
  • About Us
    • Mission Statement
    • Diversity and Inclusion Statement
    • Board of Directors
    • Annual General Meeting
    • Volunteering
  • Fundraising
    • Host a Fundraiser
    • Coast to Coast for CDKL5 
    • FundScrip
    • Jakob’s Memorial Campaign
    • Mabel’s Labels
    • Past Fundraising Initiatives
    • CDKL5 Canada Walk for a Cure
  • Contact Us

Donate Today!