We launched our online Support Community for those suffering with Spinal CSF Leaks in partnership with Inspire several months ago. Inspire is a trusted company that builds and manages many secure online support communities.
We are pleased to announce that the CSF Leak Association, a registered Charity based in the UK, will also be joining our online community. This will be one of many collaborative efforts as we work together to make a difference to those suffering with spinal CSF leaks.
As with any less common disorder, online community support is so important when there may not be others with similar issues nearby geographically. Social support and informational support can make all the difference in improving outcomes and reducing suffering of those with leaks and their loved ones.
Our Foundation and the UK Charity chose Inspire for similar reasons. Inspire is designed to offer a high degree of privacy, which is important to many members, particularly those that wish to protect their information from disability insurers and current or future employers. Email notifications are also customizable and provide quick-links to recent discussions.
Inspire hosts other support communities; you may join as many as you wish. Some of our members with Ehlers Danlos Syndrome are members of the Ehlers Danlos National Foundation Support Community, for example.
Please stop by to get involved and welcome CSF Leak Association and new members!
Together we are better!
Spinal CSF Leak Support Community