Welcome to SAF’s Support Group Page.  SAF has moved to a monthly support group model to ensure all patients have the opportunity to join as many meetings as possible.

It goes without saying that the past few years required a great deal of flexibility.  SAF’s ability to pivot and move to a virtual platform was met with great success and made it clear SAF members want to connect.  Our new monthly meetings will allow members to share and connect more frequently than ever before!

Thank you for this new format and monthly offering. Three months is definitely too long between groups, and especially if you have to miss one.  I liked the idea of a breakout group, it makes the discussion more personable and manageable.

Gina M., SAF Member

Congratulations on your first international monthly Zoom call. All of the beginning intro and excitement from the med students about going to Capitol Hill, and what is upcoming was impressive.

Doreen K., Support Group Attendee

Terrific meeting!  It was fantastic to hear from Debra, Jean and others from CARF, as well as from the medical students (what a great idea to include them!) on the advocacy and other work going on behind the scenes.  I liked the breakout rooms to keep the number of participants manageable, and our facilitator kept the conversation flowing. Thanks again for a terrific presentation, and I look forward to next month’s meeting!

Janet S., SAF365 Member

I want tell you how grateful I am that SAF listened to our needs and is giving monthly support group meetings a try. I SO appreciate the more frequent meetings and the opportunity to meet more people who are going through the ups and downs of scarring alopecia, to gain more knowledge through other people’s experience, and to just connect.

Robin Y., Newly Diagnosed

Virtual Support Group Meetings

Monthly Meetings

North America meetings occur on the first Tuesday of each month at 8pm Eastern Standard Time. Due to the Mane Event Webinar falling on the first Tuesday in September, our monthly meeting will move to September 13th and return the the first Tuesday of the month in October.  All who experience scarring hair loss are welcome.


CCCA United States

CCCA USA Support Group Meetings 2022 Dates: Sundays at 7PM EST: Coming Soon.  All who are diagnosed with CCCA in the United States are welcome to attend.


CCCA United Kingdom

CCCA UK Support Group meetings occur quarterly. 2022 Dates include: October 11.  All are held at 7PM BST.  All who are diagnosed with CCCA from our international community are welcome to attend.


CCCA South Africa

CCCA South Africa Support Group meetings occur quarterly. 2022 Dates include: Coming Soon.  All who are diagnosed with CCCA from the African content are welcome to attend.


Virtual Meeting Benefits

* More frequent meetings and set schedule. Connect on the go, from anywhere.

* Develop relationships with other patients, within and outside of your immediate geographic area. Get to hear “my story” from multiple support group leaders.

* Meetings for everyone, not just those in states with established, in-person support groups.

* Med Students will be available to make presentations at most of these meetings.

Important Information

Please register to receive the meeting link.

Please note, changes DO NOT impact the CCCA-USA and CCCA-UK meetings.  Likewise, once groups decide to resume meeting in-person, information will be listed on SAF’s website.

Support Group Leaders

Kelli, SG Leader

Abolore, SG Leader

Sandra, SG Leader

Courtney, SG Leader

Marilyn, SG Leader

Additional Resources