New study KCNQ2 Phenotype Portal

💜 Let’s make a difference – for our children and for all KCNQ2 families 💜

You may have seen recent posts about an important new study: the KCNQ2 Phenotype Portal.

Here’s the official flyer with all the details.

đź“Ś Why this matters

Our children and their stories are unique – and this uniqueness needs to be documented so that doctors and researchers can get the full picture of KCNQ2-related disorders. This is the only way to improve diagnosis, treatment, and support in the future.

Every experience, every observation from daily life can help fill in the gaps left by medical records. By sharing our knowledge, we create a valuable dataset that shows how KCNQ2 develops over a lifetime – with the goal of improving counseling, care, and quality of life.

👨‍👩‍👧‍👦 Who can participate?

  • Parents or caregivers of children with neurodevelopmental disorders or epilepsy
  • Adults who are affected themselves

 

💬 What’s involved?

  • A comprehensive interview (via Zoom or in person) where you can share your child’s developmental history
  • Questions about different life stages – as detailed as you feel comfortable sharing

 

đź“… Info Webinar: 18.08.2025 09:00 pm (CEST)
– a great opportunity to ask questions directly to the research team and learn more about the project.

🙏 Your participation is a gift to research – and to all future families facing the same diagnosis.

🔗 Direct registration: https://redcap.uth.tmc.edu/surveys/?s=FY3KMX7T7CPN8HFT

📄 Facebook post with flyer: https://www.facebook.com/share/p/1EcVEJrgYB/

Let’s show, as a community, how important our children are – and that their stories deserve to be heard.