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.
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.