Cure CLCN4
2025 Family Meeting
We are excited to announce the upcoming Cure CLCN4 Family Meeting 2025, an online event bringing together families, researchers, and clinicians from around the world. The meeting is designed to provide the latest updates on CLCN4 research and care, while creating a space for families to connect, learn, and ask questions.
This free event will take place on Saturday, 25th October 2025, via Zoom, making it accessible to families everywhere. Whether you are newly diagnosed or have been part of the community for years, the meeting is a chance to hear directly from experts, share experiences, and be part of our growing international CLCN4 community.
Important information
🗓️ Date: Saturday 25th October
🕒 Time: 2 pm British Summer Time
💻 Location: Online via Zoom
💜 Cost: Free to attend
👉 Registration: click here to register
🌐 Language: English (we are looking into options for translation)
What to expect
The program will include:
- About Cure CLCN4 – Peter Trill (Trustee & Co-Founder) and Dr. Rebeca Ridings Figueroa (Head of Research & Charity Manager) will introduce the charity, its objectives, and current projects.
- Research updates – Hear from Dr. Michael Pusch about the latest scientific findings in CLCN4-related research.
- Clinical perspectives – Dr. Emma Palmer will share insights into diagnosis, clinical features, and patient care.
- Patient registry update – Learn about progress from the Simons Searchlight team.
- Gene editing & future therapies – Dr. Marlen Lauffer will talk about gene editing research and what it could mean for the CLCN4 community.
- Live Q&A Session – An opportunity to ask questions directly to all speakers and other invited researchers & clinicians. Families will also be able to submit questions in advance.
- Meet & Chat – Breakout rooms where you can meet others in the community who speak your language. This informal, unstructured session is designed to help families connect with each other.
Meeting schedule
Corporate Foundation Sponsors
