Resources – for families
In addition to the information provided in the Families section of our website, we have compiled a list of other useful resources below, from details on opportunities to connect with other families affected by CLCN4-related condition to factsheets on CLCN4-related condition that you can use to share with your doctor and healthcare professionals.
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The 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. Inside, you’ll find up-to-date information on CLCN4-related condition, as well as family-friendly explanations of CLCN4 biology, diagnosis, and symptoms. You’ll also find advice on care, frequently asked questions, resources, and ways to get involved!
This pack is only currently available in English, but more languages are coming soon!
Further information for you & your doctor
CLCN4-related condition factsheet
This factsheet on CLCN4-related condition, provided by the Center for Genetics Education (Australia) for families affected by CLCN4, contains all the key information about this condition, including genetics, symptoms, management, resources and much more!
GeneReviews
An excellent resource to share with your doctor and healthcare professionals! This GeneReview publication contains up to date information about CLCN4-related neurodevelopmental disorder including diagnosis, clinical characteristics, management and resources.
CureCLCN4 Webinar Series
We are excited to announce that we will be starting a series of CureCLCN4 webinars soon! Details of upcoming webinars as well as recordings of past webinars will be posted here (coming October 2022!).
Past Family Conferences
Our first family conference took place last August 2021, hosting a range of fantastic speakers and informative talks on CLCN4-related condition. Recordings of the conference (with subtitles in multiple languages) are available here.
Community
CLCN4 Families Facebook Group (for families only)
A private group for the those affected by CLCN4-related condition and their families. Join for an opportunity to connect with the rest of the CLCN4 community, who are also going through the journey of a CLCN4 diagnosis. This group is not linked to or managed by CureCLCN4.
CureCLCN4 Facebook page (for wider community)
This is our organisation’s Facebook page, follow us to stay up to date with news about the charity, our research projects, fundraising initiatives, and events. Not on Facebook? You can also follow us on Instagram and Twitter!
