Make Your Voice Heard
When someone you love is affected by CDKL5 Deficiency Disorder, you want to know about every scientific advance and clinical trial that could help them. Yet, pharmaceutical companies and researchers are not in the habit of reaching out to families. Especially when the illness involved is a rare disease like CDD.
Strength in Numbers
That is why the IFCR encourages you to participate in our Connect CDKL5 community platform. When we band together, we are best able to advocate for our loved ones.
The IFCR Connect CDKL5 platform gives us a seat at the table with pharmaceutical companies, clinicians and researchers. They want data – and Connect CDKL5 means we can provide it to them. For instance, if they need a focus group of families affected by CDD in a specific region, this platform makes it possible to connect them. If they need demographic data on a specific mutation, Connect CDKL5 makes it possible to provide it.
We also share questions such as what is the incidence (risk of having a child with CDKL5) and prevalence (how many people are currently living with CDKL5) of CDD.
As a participant, you will help us answer these questions as well as receive updates on the latest research findings. You will also receive opportunities to participate in:
- Specialized surveys and focus groups
- CDKL5 Centers of Excellence research
- Regional CDD studies
Learn how your information will be used when you participate in Connect CDKL5. There is no fee to participate.
We take your privacy seriously and invite you to learn more about IFCR’s privacy protections and data protections.