Join us on May 27th & 28th 2022 for an opportunity to hear from world-leading ion channel, rare disease, and drug discovery experts.
Support Marc, Rob, Jose and Michael on their quest to walk 60 km in 24 hours along the river Thames in London.
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!
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
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.
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.
Join us from anywhere in the world in helping individuals and families affected by CLCN4. Donate, fundraise or volunteer your time or expertise.
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
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.