CDKL5 Virtual Meetups

Let’s get together

We are launching CDKL5 Virtual Meetups to give the CDKL5 community an opportunity to bond during this time of social isolation.

These meetups are meant to be fun, social events where you can meet other families living with CDKL5 Deficiency. We hope you will find new friends, exchange ideas and enjoy chatting and socializing together.

The meetups are free-form; there is no presentation or slideshow. We will provide a moderator to help launch the event, assist with introductions and keep the conversation going.

We use Zoom to allow up to 25 people to join each meetup. We also have the ability to break into sub-rooms, if desired. For instance, if people want to break into groups by geographic region or by age of children.

How do I participate?

Sign up via Connect CDKL5 in order to participate in the CDKL5 meetups.

We will be using the Connect CDKL5 platform to let people know about the meetups. When we have the dates/times set, you will receive an email with the login details. We will schedule the meetups so we can accommodate different time zones.

If you are new to Zoom, you will find it very easy to use. Once we know the dates/times, you will be emailed a link, phone number and password. At the time of the meetup, just click the link from any device and type in the password when prompted. If you prefer, you can also call in from your phone (but you do not need to connect using both computer and phone).


Respect is the number one rule for all IFCR meetups. We ask you to remember that every situation is unique. What is right for you and your family may not be right for someone else – and that’s okay. The meetups are a place of acceptance, not judgment.

We also want to be clear that these meetups are not places to offer medical advice. Feel free to share your experiences but refrain from offering medical advice.

Also, since being home with the whole family can create a noisy environment, please use the mute button liberally.


Each meetup will be facilitated by a member of the IFCR Board or a volunteer Family Support Representative. The moderators will help get the conversation going with a few questions but will not give a presentation. They are there to help participants meet one another and talk to each other. They can also help with technical issues like muting and breaking into Zoom rooms.

Have questions?

Please contact us if you have any questions.

Photo by Ubaidhulla Adam on Unsplash