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. 


Click here to request access to the Facebook group.

Refsum Disease Support Network

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

Click here to request access to the Yahoo groups

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.  

Click here to like our Facebook page

Contact us

P.O.Box 865

Windham, Maine 04062

United States

Follow us

  • Facebook
  • LinkedIn Social Icon
  • YouTube

EIN: 84-3343395

501(c)(3) IRS Approval:

This website is not designed to diagnose, advise or provide medical opinions, treatment or services. It is for general knowledge purposes only. Please consult a licensed medical professional with all questions and concerns regarding a medical condition. 

© 2020 Global DARE Foundation