top of page

Connect with the Refsum Community

Please reach out to us if you are affected by Refsum disease in any way.  No one should have to cope with this disease alone.  Below you will find ways to connect with our Refsum Community. We also host regular Refsum Community calls to connect with one another.   Email any questions to  




We have a private Facebook group called Refsum Friends.  There is active dialogue in this group.  There is also a good history of conversations that can be searched on various topics. 


Request access to the Facebook group here


Refsum Friends

Google Group

We have a private Google email distribution for the Refsum Community.  This is a good way to interact with the individuals not on Facebook or for more lengthy conversations. 

Request access to the Google group here


Global DARE Facebook Page

We have a Global DARE Foundation Facebook public page.  This is used for the foundation to post public information on the Foundation and Refsum Disease.  People can also use this page to run individual fundraisers to support Global DARE Foundation.  

Like our Facebook page here

bottom of page