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Being around other people just like me in a safe, welcoming group setting is not only therapeutic, it’s life-changing. |
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Patient Support Groups
One of the most valuable services CARF provides is connecting you with other cicatricial alopecia patients who truly understand the emotional and physical toll of a diagnosis. By attending a support group meeting you can express yourself in the safety of a group that understands. You will also learn from other patients as they share ideas and tips about cosmetic options. It’s our hope that you will leave these meetings with a sense of belonging to a larger community.
A unique feature of our support group meetings is that each group has a knowledgeable physician moderator that will either be present at the meeting or available by email or phone to answer questions that may arise to ensure correct, up-to-date information is being shared.
Support group meetings take place at least two times a year. Patients are welcome to attend the nearest support group in their own state or a neighboring state. There is NO FEE to attend one of these meetings, so take advantage of this unique and inspirational opportunity to meet others who walk in the same shoes as you. For more information or to be listed to receive meeting notices, please contact the support group leaders listed below.
CARF United States Support Groups
| Date: Monday, April 26, 2021 Time: 7:00PM EST Location: Meetings are Virtual. Save The Date 2021: July 26 / October 26 |
Leader: Renée
Please RSVP to join the CARF Connects Atlanta Meeting.
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| Date: Sunday, April 25, 2021 Time: 2:30 PM-4:30 PM Location: Meetings are Virtual. Save The Date 21/22: September 26 & January 9 |
Physician Moderator: Lynne Goldberg, MD Leader(s): Doreen & LoriPlease RSVP HERE to join a CARF Connects Meeting in Boston! |
| Date: Sunday, April 18, 2021 Time: 7:00PM EST Location: Meetings are Virtual. Save The Date 2021: TBD |
Leader(s):Zahra & Juliana
Please RSVP to join a CARF Connects CCCA Meeting.
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| Date: TBD 2021 Time: 2:00PM – 4:00PM Location: Meetings are Virtual. |
Medical Moderator: Dr. Victoria Barbosa Please RSVP HERE to join a CARF Connects Meeting in Chicago! |
| Date: Saturday, July 10, 2021 Time: 2:00 PM – 3:30PM Location: Meetings are Virtual. Save The Date 2021: October 9 |
Medical Moderator: Dr. Katherine Ayoade Leader(s): Marilyn – Please RSVP HERE to join a CARF Connects Meeting in Dallas! |
| Date: Details Coming Soon Time: 12:00PM -3:00 PM Location: Kaiser Lakewood Offices, Blue Spruce Conference Room 8383 West Alameda Avenue, Lakewood, CO Please feel free to bring your lunch or bring something to share with the group. |
Physician Moderator: N. White, NP Leader(s): Position Open. Please RSVP HERE to join a CARF Connects Meeting in Denver! |
| Date: Wednesday, April 14, 2021 Time: 7:30PM EST Location: Meetings are Virtual. Save The Date 2021: July 14 / October 13 |
Leader:Larraine
Please RSVP to join the CARF Connects Maryland Meeting.
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| Date: Wednesday, April 21, 2021 Time: 7:30 PM – 9:00 PM Location: Meetings are Virtual. Save the Date 2021: July 13 / October 12 |
Leader: Kellie Rao Please RSVP HERE to join a CARF Connects Meeting in Michigan! |
| Date: Sunday, July 11, 2021 Time: 3:00 PM-4:30 PM Location: Meetings are Virtual. Save The Date 2021: October 10 |
Physician Moderator: Nicole Rogers, MD Leader(s):Elayne & Aloma Please RSVP HERE to join a CARF Connects Meeting in New Orleans! |
| Date: Tuesday, April 27, 2021 Time: 7:00 PM Location: Meetings are Virtual. Save The Date 2021: July 27 / October 26 |
Medical Moderator: Kumar Sukhedo Please RSVP HERE to join CARF Connects New York City! |
| Date: Tuesday, July 6, 2021 Time: 5:00PM – 6:30PM Location: Meetings are Virtual. Save The Date 2021: October 5 |
Physician Moderator: Vera Price, MD & Ingrid Roseborough, MD Leader(s): Marilyn Please RSVP HERE to join a CARF Connects Meeting in San Francisco! |
| Date: Saturday, May 8, 2021 Time: 10:00AM – 11:30AM Location: Meetings are Virtual. Save The Date 2021: July 17 |
Coordinator: Kris Wharton Please RSVP HERE to join a CARF Connects Meeting in Tampa! |
CARF International Support Groups
| Date: Tuesday, April 13, 2021 Time: 7:00PM GMT Location: Meetings are Virtual. Save The Date 2021: July 13 / October 12 |
Leader: Lorna Jones Physician Moderator: Sharon Belmo Please RSVP HERE to join the CARF Connects CCCA UK International Meeting
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| Date: TBD Time: 7:00PM AST Location: Virtual. Save The Date 2021: TBD |
Leader: Ncoza
Please RSVP HERE to join the CARF Connects South Africa Meeting
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NEW – Support groups are in the early stages of forming in the following areas:
CCCA | Contact Colleen to start a support group in your area
Check back frequently for news and updates about these emerging locations. Also, if you live in any of these areas and would like to get involved, let us know . We’d love to have you!
Start A Support Group
If you live in an area where there is no support group and you would like to help CARF organize one, please contact us at info@carfintl.org. It’s not as hard as you may think. CARF has made it easy for you by providing a Support Group Start-up Kit for volunteer leaders looking to start a new group. Plus, other support group leaders from other arears and CARF staff will help guide you through the process. Just think about how meaningful this can be not only for yourself, but for other patients as well. It will be incredibly rewarding.
Online Groups
Coming soon! CARF will be launching a private, online community for cicatricial alopecia patients to connect and share their story and experiences. This online portal will be professionally monitored to ensure that all information exchanged is relevant and well-intentioned for cicatricial alopecia patients. Registered users are required to remain anonymous, so it will be a safe place for patients to express themselves without being identified. Visit the CARF website frequently for updates about this new way to communicate.
Connect One-on-One
In addition to in-person support groups meetings and virtual connections, CARF can match patients with a Patient Outreach Volunteer (POV). These volunteers are veteran, qualified, and long-standing members of CARF who have some form of cicatricial alopecia. They can serve as a great introduction to our community and help reduce patient anxiety and uncertainty while providing unbiased treatment and disease knowledge. You can speak to one of CARF’s POVs either by phone or email. Click here to request to be matched with a POV today!
© 2019 Cicatricial Alopecia Research Foundation