The second workshop “CDKL5 Asia” on the theme of “For the Advancement of Understanding and Treatment of CDKL5 Deficiency Disorder”, will be held at Sanjo Kaikan, The University of Tokyo, on September 21 and 22, 2023. This workshop will be the first face-to-face meeting since the start of the COVID pandemic, aiming at bringing together scientists, clinicians, and pharmaceutical companies from around the world working on CDKL5 Deficiency Disorder (CDD), along with representatives from patient organizations and CDD families to meet and discuss the latest developments in the field and to advance towards treatments and cures.
Dr. Takao Hensch, IRCN Director, will give opening remarks, and Dr. Kazuyuki Aihara, IRCN Deputy Director, and Dr. Takamitsu Watanabe, IRCN Principal Investigator, will give their talks.
Registration is required. Click here to register.
Date: September 21(9:30-17:00)-22(9:15-15:45), 2023
Venue: Sanjo Kaikan, The University of Tokyo or via Internet (Registration is required)
Registration form: https://docs.google.com/forms/u/1/d/e/1FAIpQLSdLzs0mzk5SkOH4kHQeQTPLHRc26BpZtBaaMqCjwzCRWmjssQ/viewform
For more information: 2nd ASIA CDKL5 Workshop Program
CDKL5 Deficiency Disorder:
CDKL5 Deficiency Disorder (CDD) is a rare brain disorder caused by a mutation in the CDKL5 gene (cyclin-dependent kinase-like 5), which is located on the X chromosome. Most children affected by CDD suffer from seizures that begin in the first few months of life and are unable to walk, talk or feed themselves. Other symptoms of CDD include cognitive delays, difficulties in communication, behavioral issues, cortical visual impairments, sleep disturbance, and gastrointestinal issues. Currently, no therapies exist for CDD and only symptomatic pharmacological treatments are available.
The meeting will be the first face-to-face meeting since the start of the COVID pandemic, aiming at bringing together scientists, clinicians, and pharmaceutical companies from around the world working on CDD, along with representatives from patient organizations and CDD families to meet and discuss the latest developments in the field and to advance towards treatments and cures.
This is a unique opportunity for parents and professionals to come together from all over the world, under one roof, to hear the latest in research and clinical trials (Day 1) and learn the most current recommended care and advocacy strategies for every stage of life (Day 2). While it is a hybrid meeting, we strongly encourage participation in-person, as nothing replaces the experience of meeting face-to-face and spending time developing lasting relationships.
CDKL5 Deficiency Disorder Family Day, September 22, 2023
The goal of a family day (Day 2) is to provide a space to connect and socialize for people that share a similar reality, allowing parents and children to meet and exchange experiences. This is especially important for severe rare disorders where people can feel very isolated and might not naturally meet anyone with the same condition outside a patient/caregiver group or association.