Cure CLCN4

Cure CLCN4 We are a registered charity (1190344) aimed at providing support, raising awareness and funding medical research for effective treatments for CLCN4.

CLCN4 is a rare genetic condition causing intellectual disability and other problems such as epilepsy, behavioural disorders, movement disorders and microcephaly.

📢 Call for abstractsThe 2026 Cure CLCN4 Scientific Conference is now accepting abstract submissions for poster presentat...
04/03/2026

📢 Call for abstracts

The 2026 Cure CLCN4 Scientific Conference is now accepting abstract submissions for poster presentations and lightning talks. These sessions are particularly designed to provide students and early-career researchers with an opportunity to share their research, receive feedback, and connect with the CLCN4 research community.

Submit your abstract by emailing us at [email protected]

🗓 Deadline: 1 May 2026
✨ More information: https://cureclcn4.org/2026-cure-clcn4-conference/

Real progress for CLCN4 comes from sustained community effort 🌍Supporting research, sharing knowledge, and strengthening...
28/02/2026

Real progress for CLCN4 comes from sustained community effort 🌍

Supporting research, sharing knowledge, and strengthening connections help change what rare means for families today, and bring us closer to answers for tomorrow.

Join us in making a difference. Donate or fundraise at 👉https://cureclcn4.org/donate/

CLCN4 is rare. But research is changing what rarity looks like for families.Through registries, research models, and col...
27/02/2026

CLCN4 is rare. But research is changing what rarity looks like for families.

Through registries, research models, and collaboration supported by Cure CLCN4, knowledge is growing and connections are strengthening.

Finding answers after a rare diagnosis isn’t always simple 🧩Cure CLCN4 helps families access the answers that exist, and...
25/02/2026

Finding answers after a rare diagnosis isn’t always simple 🧩

Cure CLCN4 helps families access the answers that exist, and works to get answers for those that don’t, through research and collaboration 🔬

We also connect newly diagnosed families with our growing community of CLCN4 families, so no one has to face this journey alone 🌍

Rare diseases are often defined by numbers. But for families living with CLCN4, the reality goes far beyond statistics. ...
23/02/2026

Rare diseases are often defined by numbers. But for families living with CLCN4, the reality goes far beyond statistics. Rarity can mean navigating healthcare without clear guidance, established pathways, or easy answers.

This Rare Disease Week, we’re exploring what “rare” really means, medically, personally, and as a community. What does rare mean to you?

People with a CLCN4 variant can be affected in different ways.�The specific CLCN4 genetic change, s*x, and whether the c...
13/02/2026

People with a CLCN4 variant can be affected in different ways.�The specific CLCN4 genetic change, s*x, and whether the change is inherited or de novo (spontaneous) all play a role in how CLCN4 presents in each person 🧬

You can find more information in our Welcome Pack 👉 https://cureclcn4.org/resources_families/

Genetic test results can include terms like variants and VUS, which may feel confusing at first. This post explains what...
11/02/2026

Genetic test results can include terms like variants and VUS, which may feel confusing at first. This post explains what these words mean and how research continues to improve understanding over time.

To learn more, explore our Welcome Pack 👉 https://cureclcn4.org/resources_families/

Understanding how CLCN4 works can help explain its role in development. This post breaks down how a gene provides instru...
09/02/2026

Understanding how CLCN4 works can help explain its role in development. This post breaks down how a gene provides instructions for a protein that supports brain cell function 🧬

It’s important to note that not all CLCN4 variants affect protein function. Some variants can cause CLCN4-related condition, while others don't have an effect on health.

For more background information, you can explore our Welcome Pack 👉 https://cureclcn4.org/resources_families/

Do you have questions about CLCN4? The Q&A session from our 2025 Family Meeting features family questions answered by re...
07/02/2026

Do you have questions about CLCN4? The Q&A session from our 2025 Family Meeting features family questions answered by researchers and clinicians, covering important topics on CLCN4 and ongoing work. Available to watch with subtitles in all languages 👉 https://youtu.be/_Y1wH9kv_eU

We have one charity place available for the London Marathon 2026 🏃‍♂️If you’d like to run for Cure CLCN4 and support rar...
03/02/2026

We have one charity place available for the London Marathon 2026 🏃‍♂️

If you’d like to run for Cure CLCN4 and support rare disease research, we’d love to hear from you. Drop us an email at [email protected] 📩

Knees not quite up to it? A like or share could really help us find our runner 🙏

You don’t need a big platform or a big plan to make a difference.Every follow, share, and fundraiser helps Cure CLCN4 ke...
31/01/2026

You don’t need a big platform or a big plan to make a difference.

Every follow, share, and fundraiser helps Cure CLCN4 keep building awareness, connection, and research collaboration.

If you’re fundraising this year (birthday, run, uni event, anything), message us, we’ll support you and share it with the community.

To learn more about Cure CLCN4 visit our website 👉 https://cureclcn4.org/

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