CARF support groups serve as
a forum for patients to share insights in a supportive, safe and comfortable setting. Through the exchange of information, participants find emotional, medical and cosmetic support for living with cicatricial alopecia. For more information, please visit our patient support page.
Thank you for visiting the CARF website, where we hope you will learn about the latest information and resources concerning cicatricial alopecia.
Cicatricial (scarring) alopecia refers to a group of rare disorders which destroy the hair follicle and replace it with scar tissue, thereby causing permanent hair loss. It occurs worldwide in otherwise healthy men and women of all ages.
CARF has grown from a group of seven patients to include more than 850 patients who have received information through our patient support and educational work - newsletters, support groups, conferences, and website. In addition, CARF-funded research is leading the effort to find the cause and cure or prevention of cicatricial alopecia.
SAVE THE DATE!
6th International Patient-Doctor Conference
When: April 2014
Where: Chicago, Illinois, USA
Host: Dr. Victoria Barbosa
2012 Conference Recap
The 2012 conference was a big success with 118 people in attendance – the highest attended patient conference in CARF's history.
Presentations by leading experts included an introduction to Cicatricial Alopecia by CARF Founder Vera H. Price, MD, FRCP(C). An explanation of the role of scalp biopsy in Cicatricial Alopecia by Lynne J. Goldberg, MD was then followed by the presentation of the medical and surgical treatments available for cicatricial alopecia by Valerie D. Callender, MD. Ken Washenik, MD, PhD informed updated attendees on what is new for Cicatricial Alopecia and then Victoria Barbosa, MD, MPH, MBA shared lessons and inspiration from the Chicago support group, where she serves as the physician leader.
Patient and physician attendees submitted questions for the important Ask the Experts Panel on Saturday afternoon. The panel energetically answered and debated questions about their individual practices on the diagnoses and treatment of the cicatricial alopecias.
The conference ended on a high note Sunday when Drs. Pamela G. Devaney and Rebecca Johnston shared tools for coping with Cicatricial Alopecia through hypnosis and the mind-body connection. Barbara Starr, NP shared tips on how to maximize your time in the office to make the most of each visit. Yolanda Lenzy, MD, MPH is clearly on fire for research and a cure, which she shared through her talk about her personal passion for treating those who are diagnosed with cicatricial alopecia.
Future issues of the CARF Communique newsletter will feature detailed write-ups from the conference. If you are not already signed-up to receive the newsletter, please do so today by visiting http://www.carfintl.org/join.html.
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