MAIN LESSONS FROM THE 2020 CDKL5 FORUM

2020 is the year when the world discovered the urgency that the rare disease community feels to develop effective medications and cures. It is also the year that prevented us from hosting large conferences, so the 6th edition of the CDKL5 Forum, which would have taken place in London, UK, instead took place October 12-14…

Details

September 18-19, 2019: CDKL5 ASIA Workshop 2019

~For the advancement of understanding and Treating CDKL5 Deficiency Disorder~IRCN will hold two-day workshop which is organized in partnership with Loulou Foundation, and represents the first event on CDKL5 Deficiency Disorder (CDD) in Japan. Our overarching goal will be to reach out to CDD patient families and engage the scientific community in new partnerships and knowledge…

Details

Ava Marie

Ava is a 9 month old little girl who started having seizures at 8 weeks old and was diagnosed with CDKL5 at 4 months old. At the time Ava began having seizures we were very scared and confused. My entire pregnancy, her birth, and the first 2 months of her life were fairly uneventful. She did…

Details

Noa Luna

In 2008 my dream came true I became pregnant from a girl. After a quiet easy pregnancy of exactly 40 weeks Noa Luna was born. A beautiful baby, she was perfect. Normal weight, length, Apgar score 9-10. I gave her breast feeding, she drunk if she has always done this. She was very quiet relax…

Details
Josephine

Josephine

My daughter, Josephine, is 3 years old. She is loving, sweet, demanding, needy, and the light of my life along with her older neurotypical siblings who are 16, 18, and 21. She was diagnosed with CDKL5 right at her third birthday, which was less than 3 months ago. Our CDKL5 case seems to be very…

Details
cdkl5 forum 2018

Fourth Annual Meeting CDKL5 Forum

On behalf of the Loulou Foundation and our partners from the Orphan Disease Center at the University of Pennsylvania and the CDKL5 Alliance, it gives us great pleasure to welcome you to the fourth annual meeting of the CDKL5 Forum for the advancement of science and therapeutic approaches. This year, the Forum returns to London…

Details