WELCOME
Making a Difference
Inclusion, equality and human rights are the issues we face. If you are interested in getting involved please contact us.
Welcome
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 History
The decision to start an Australian organisation was made during the 2018 Denver conference when I met someone who started the Ireland foundation with only one diagnosed case. At the time Australia had 20 diagnosed cases of CKDL5 – a number I assumed was too small to warrant an organisation. Upon discovering Irelands story I had no excuse for inaction.
Raffael - my teacher
Our Goals
Be a voice for those with rare disease. Find a cure for genetic disorders. Allow this experience to make us all better people.
CDKL5 FUNDRAISER OCTOBER 2018
Welcome speech at Davidson’s Restaurant Geelong 2018.
We raised $10 000 towards research and a cure for CDKL5 Deficiency Disorder.
