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Welcome Pack_1
Cure CLCN4 Welcome Pack

Our brand new Welcome Pack is now available for download! This comprehensive booklet is filled with essential resources for families navigating life with CLCN4-related condition,

Are you affected by CLCN4-related condition? Join the CLCN4 families Facebook group today!
CLCN4 Families Facebook group

Are you or a loved one living with CLCN4-related condition? Click on the button below to join a family-only, private Facebook group and connect with other families going through the journey of a CLCN4 diagnosis

Rat models
Clcn4 Rat Models are Now Available!

Thanks to the fundraising efforts of the CLCN4 community and the work of the PHENOMIN-ICS team, two Clcn4 rat models are now available to researchers!

Grant Recipients
Cure CLCN4 Pilot Grant Program:
Meet the Recipients

Click below to meet the awardees and learn about their projects!

Patient registry
Join our Patient Registry

Are you or your child affected by CLCN4? CureCLCN4 is partnering with Simons Searchlight to establish a CLCN4 patient registry. Click on the link below to learn more and sign up today!

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Let’s cure CLCN4

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

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

CLCN4 genetic condition

Our goal to find a cure for CLCN4

Raising awareness

We work to raise awareness of CLCN4 as a condition amongst geneticists, neurologists and scientists. This improves rates of diagnosis and accelerates the momentum for research.

Family support

Patients with CLCN4 gene variants can suffer from developmental delay, seizures, and behavioural challenges. We understand how having a loved one with this condition can be life-changing. We are here to support you, and to develop treatments that enhance quality of life in the areas that matter.

Research with us

We support research aimed at accelerating the understanding of CLCN4 biology, to allow identification of effective new treatments. This is an emerging space with much potential to make a difference.

Help us

Join us from anywhere in the world in helping individuals and families affected by CLCN4. Donate, fundraise or volunteer your time or expertise.

Patient registry

Our patient registry is a vital part of our efforts to translate basic scientific research into tangible effective treatment for patients. We work on providing a comprehensive clinical database of a well-characterised cohort, to facilitate the development of biomarkers, genotype-phenotype correlations, and invitation of patients to clinical trials.

What We Do

Cure CLCN4 is committed to finding viable treatment options for families affected by CLCN4 variants. Some of the things we support include:

– The identification of suitable research projects

– Setting up and maintenance of a patient registry

– Facilitation of a community of affected families

 

Our Story

Cure CLCN4 was established by a family with an affected child. Read our story here.

Our journey is an ongoing learning experience on how to open new pathways for game-changing treatments for patients, families and researchers.

We Invite Families All Over the World

If you have a family member affected by a CLCN4 variant, we invite you to get in touch and join our Registry.

Our Partners

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eurodis clcn4
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Get in Touch. Get Involved.

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