Our amazing team of professionals, friends and families are committed to helping those of us who have rare and more complex needs. We are passionate about CDD (CDKL5 Deficiency Disorder), and rare disease advocacy. We believe all people have the same rights even if they are unable to speak up for themselves and we place great importance on getting to know how a person sees the world so that we can support them in the best way they need through active listening, and caring. 

We have been touched by CDD and our support also extends to other rare genetic epilepsy disorders. Our non-profit organization is committed to serving the community in the best way possible. Do you think you would be a good fit? Our dedicated staff, professionals, friends and families are working hard all the time to support those who have rare and more complex needs. We are particularly passionate about CDKL5 Deficiency Disorder (CDD), which is a type of genetic encephalopathy. This condition affects brain development and causes many complications such as Epilepsy that cannot be managed with current medications, lack of speech, mobility, vision, hearing, feeding difficulties, breathing problems etc. 

This condition limits life expectancy and dramatically affects quality of life. This condition is usually not hereditary and can happen to anyone and is due to a mutation that occurs during or shortly after conception. There is no treatment or cure for CDD however this has become possible through medical advances and the discovery of gene therapy. This condition and other rare genetic disorders are included in our mission of special needs advocacy, awareness and doing what we can to improve the quality of life for the person themselves and their families and loved ones who support them. We believe all people have the same rights even if they are unable to speak up for themselves and we place great importance on getting to know how a person sees the world so that we can support them in the best way possible. 

Although we are called the Australian Foundation for CDKL5 Research, we include other similar conditions in our awareness projects and hope our work will make life better for anyone affected by chronic, complex conditions. Our non-profit organization is committed to serving the community in the best way possible.