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Our Research Vision and Priorities

Here at the CDKL5 Research Collaborative, we are driven by a single goal: to change lives now for families living with CDKL5 Deficiency Disorder. We are focusing on key clinical areas that are currently not being funded, or are very underrepresented in existing research agendas.  We have a clear vision and plan for taking CDKL5 clinical care and innovation to the next level. We are not content with the status quo, and we understand  the layers upon layers of work that needs to be done to achieve our goals.  We know the work will be hard, and we are prepared for the challenge.  We have the experience, insight, knowledge, and passion to lead this effort on a global scale on behalf of our CDKL5 community.  


Our Main areas of focus are:

  • Funding innovative and cutting edge clinical research across the clinical spectrum, including center-based, community and educational settings.

  • We are focusing heavily on neuro plasticity and neuro-abilitation, working with key leaders in the field to develop therapeutic guidelines and interventions.

  • Advocacy for our CDKL5 children and families, in the community, medical, pharmaceutical, policy-making and drug development spaces.

  • We believe deeply that all children and adults living with CDKL5 and other rare disorders have a need for their hearts, minds and souls to be enriched and nourished through the arts and humanities.  Art and creativity enrich the mind and can help  improve communication, neuroplasticity and neuro-habilitation.  We will open up opportunities in the world of music, theater, dance, art and culture to children and adults, and their families, who often would not have access to these experiences.    

  • Collaboration across all fields and stakeholders.  Research and clinical care do not exist in isolation.  There are numerous individuals, organizations, companies, academic centers, investors, pharmaceutical companies, government agencies, and other disorders that must all work together to achieve the best possible outcomes for our CDKL5 community.  

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