Resource Library

We’ve created this Resource Library with informational guides, helpful external links, and educational video content especially curated for families. 

Guides External Resources Videos

Explore Our Guides

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Guide
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CDKL5 Guide for Parents

Guide
Multiple Languages
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Recommendations For Managing Individuals With CDD

International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder

External Resources

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External Link

Parent to Parent USA supports a national network of programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.

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External Link

DEE-P Connections provides helpful webinars on topics relevant to caring for someone with a DEE.

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View Videos

Video

Virtual Town Hall: CDD Research Updates from Ultragenyx (Aug 23, 2022)

Watch on Youtube
Video

ICCRN – Get CDKL5 Clinical Trial Ready! (Mar 27, 2022)

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Video

Celebrating 10 years of patient data collection with the International CDKL5 Disorder Database! (Sept 30, 2022)

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Video

Gene Therapy: A Conversation With Dr. Benke & Ultragenyx (Nov 16, 2021)

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Video

Sleep and CDKL5 Deficiency Disorder

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Video

Optimizing Existing Epilepsy Treatments Panel

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Video

A Deeper Dive into Genetics & Hot topics: Research update, treatments, and covid19.

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Video

What’s the deal with all the consent forms? Learn about ICCRN & current clinical research landscape

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Video

How come there are so many databases?

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Video

Exploring variation in the clinical presentation of CDD

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Video

Quality of Life & Living Well at Home

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Video

Gastrointestinal Concerns in CDKL5 Deficiency

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Video

Development of Clinical Severity Scale for CDD

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Video

Global Genes Workshop: Introduction to participating in rare clinical trials

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Video

Developing Biomarkers & Outcome Measures for CDD Research

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Video

Novel Epilepsy Therapies Panel

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Video

Student Centered AAC for Leraners with Cortical Visual Impariment

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Video

Updates on Published CDD Research From Fish to Humans

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Video

We Like to Move It, Move It! Physical Rehabilitation and Therapy Modalities in CDKL5 Deficiency

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Video

Movement Disorders: Identification of Abnormal Movements & Potential Interventions

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Video

Cortical Vision Impairment

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Video

Presuming Competence: Shifting to Solutions and Success

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Video

Gastrointestinal Problems in CDKL5 and Rett like Disorders

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Video

Connecting Through Communication: Forming initial connections anytime, anywhere, anyhow

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Video

Challenging Behaviors in individuals with CDD

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Video

CDKL5 Center of Excellence | Cleveland, OH

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Video

CDKL5 Center of Excellence | St. Louis, MO

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Video

CDKL5 Center of Excellence | Philadelphia, PA

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Video

CDKL5 Center of Excellence | Boston, MA

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Video

CDKL5 Center of Excellence | Denver, CO

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Video

CDKL5 Patient-Focused Drug Development Meeting (Full Program) (Nov 1, 2019)

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Video

Ultragenyx Preclinical UXO55 Update February 2023 (Feb 13, 2023)

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Video

Who do you want on your team and why

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Video

Let’s Talk Puberty, Periods, and CDKL5 for Girls and Women with Special Medical Needs

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Video

Genetics 101: What’s in a CDKL5 mutation?

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Video

Gastrointestinal Concerns in CDKL5 Deficiency

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Video

Therapeutic Night-time positioning CDKL5

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Video

CDKL5 Clinical Trials Readiness Study Update | ICCRN (Apr 21, 2023)

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Video

CDKL5 Center of Excellence | Los Angeles, CA

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Video

Independent Access to Their Voice: Supporting social connections through technology

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Video

Epilepsy Phenotype in CDKL5 Deficiency Disorder

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