Family Resources
Information about NALCN Channel-related disorders can be found in this Fact Sheet from the New South Wales Center for Genetics Education.
RareX Data Collection Platform
Getting started
- Sign up for a CridID first so all data can be linked across research platforms while keeping your information de-identified. Detailed steps are here.
- Get started on RareX using the resources below. https://rare-x.org/nalcn/ is our community's dedicated homepage.
RareX Launch
Data Sharing
When signing up, you will be asked what data you want to be made available to researchers. Here are Channeling Hope's recommendations:
Questions and troubleshooting
Email your questions to rarexsupport@globalgenes.org and cc science@channelinghope.org.
GIVE LIVELY FUNDRAISING IS LIVE: Give Lively is a fundraising platform that is free for nonprofits and intuitively easy to use for donors. Help us Fundraise by setting up your own NALCN Research Fundraiser on GiveLively contributing to the Channeling Hope Foundation. For fundraising ideas or support, please contact dduggan@channelinghope.org.
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