Trusted links
Curated from reputable Australian organisations and experts.
This page has not yet been reviewed by our Scientific and Medical Advisory Committee. Content is written by parent volunteers and may not reflect current medical guidelines.
Resources
Resources & Helpful Links
Curated links to trusted resources for Australian CDKL5 families. Each resource has been reviewed by our team to help you find information, services and support you can rely on.
Reviewed by our team
Every link is reviewed to ensure relevance and reliability.
Practical support
Resources that provide real help for families and caregivers.
Index
Browse resources by topic
Each topic links out to a vetted Australian or international resource. Click through to the source for the full information.
Cortical Visual Impairment
CVI Scotland
Comprehensive resource for understanding cortical visual impairment (CVI), common in children with CDKL5 Deficiency Disorder.
(opens in a new tab)Little Bear Sees
US-based CVI advocacy nonprofit. Free family-facing resources, parent guides, and the Little Bear Sees iPad app, designed around how children with cortical visual impairment process visual information.
(opens in a new tab)Advocacy & community
Rare Portal
Australian online portal connecting people affected by rare disease with information, support and other community members.
(opens in a new tab)Rare Voices Australia
National peak body for Australians living with a rare disease. Advocacy, policy work, and connection to the wider rare-disease community.
(opens in a new tab)Publications & databases
International CDKL5 Disorder Database, search interface
Search the International CDKL5 Disorder Database, 450+ genetically confirmed CDD patients globally, by clinical, developmental and genetic characteristics. Run by The Kids Research Institute Australia.
(opens in a new tab)2025 International CDKL5 Disorder Database Newsletter (PDF, 5.0 MB)
Annual newsletter from the International CDKL5 Disorder Database, run by The Kids Research Institute Australia. Updates on database growth, recent CDD research, and family stories.
(PDF download)Can’t find what you need?
Our team is here to help. Get in touch and we’ll do our best to connect you with the right information and support.