Pinned post
Patient voices don’t just matter; they help drive research forward. Sign up today for the ileak registry℠ to support spinal CSF leak research at ileakregistry.org
Spinal CSF Leak Foundation
@spinalCSFleak
A US 501(c)3 nonprofit org that helps raise awareness, educate, & support research on intracranial hypotension & spinal cerebrospinal fluid (CSF) leaks.
520 Following 2.9K Followers 3.9K Posts
Latest posts 5
There's still time to register for this year's Spinal CSF Leak: Bridging the Gap! Next weekend's hybrid event features physician, researcher, & patient speakers, & will be streamed online for virtual attendees. Attendance is free for patients.
To register: secure.qgiv.com/for/SpinalCSFl…
To register: secure.qgiv.com/for/SpinalCSFl…
Registration is now open for the 4th annual Spinal CSF Leak: Bridging the Gap conference, hosted by @AndrewCallenMD and @CUAnschutz, and sponsored by the Spinal CSF Leak Foundation.
For the agenda and to get tickets for the Nov 14-15 hybrid event, see: secure.qgiv.com/for/SpinalCSFl…
For the agenda and to get tickets for the Nov 14-15 hybrid event, see: secure.qgiv.com/for/SpinalCSFl…
"Rare deleterious variants in FBN2 might cause type 1b spontaneous spinal CSF leak, supporting the integration of FBN2 genetic testing into clinical practice."
Thank you to the authors for ensuring that this paper is open access!
Full text version: thelancet.com/journals/laneu…
Thank you to the authors for ensuring that this paper is open access!
Full text version: thelancet.com/journals/laneu…
www.thelancet.com Spontaneous spinal CSF leaks: a rare variant exome sequencing study and functional analysis Rare deleterious variants in FBN2 might cause type 1b spontaneous spinal CSF leak, supporting the integration of FBN2 genetic testing into clinical practice. As in other connective tissue diseases,... *OPEN ACCESS* In this comprehensive translation study combining human genetics, functional assays, and mouse models we showed that FBN2 mutations increase susceptibility to spontaneous CSF leaks. Science has entered our field @spinalCSFleak @issclsociety pubmed.ncbi.nlm.nih.gov/42309087/View quoted post on X
To quantify the barriers to care spinal CSF leak patients face, the Foundation collaborated with @AndrewCallenMD and @DanielM737 on a patient survey and paper.
We are thrilled to share that it has been accepted by @TheAJNR!
Abstract here: ajnr.org/content/early/…
We are thrilled to share that it has been accepted by @TheAJNR!
Abstract here: ajnr.org/content/early/…
