On Sunday afternoon, June 22, a group of XK patients and their loved ones, met via Zoom for an informal “get-to-know-you” and to share disease-related issues.  All eight patients were US-based, save for a gentleman who joined from Iceland. Several patients were joined by spouses, partners, or parents. Everyone found it a positive experience, and a helpful reminder that we are not alone. In one instance, an XK carrier discovered that she lived in the same town as the parents of an XK patient!  Several agreed to share contact information, and an XK Facebook support group was launched as a direct result of input from those gathered.

Another Zoom gathering of XK patients and their loved ones is tentatively planned for late September.  If you are an XK patient and would like to be informed of this opportunity to meet others with your same disease, please contact Joy Willard-Williford at joy@naadvocacyusa.org and she will make sure you get a formal invitation. We meet at 2pm EST, but we welcome other XK patients from around the world.  

If you are interested in joining the private Facebook XK Support Group, you can find us at https://www.facebook.com/groups/929157575991261. Of course you must be on Facebook to join the group.

Finally, this effort came about organically, beginning with a Zoom chat between an XK caregiver and an XK patient and his wife. That conversation was so helpful that it was decided to expand it to others. We are wondering if patients with VPS13A and their families might be desirous of a similar opportunity to network via Zoom. If you are interested, please contact Joy at joy@naadvocacyusa.org and we will work towards that goal if there is sufficient interest.