Scarring Alopecia Foundation (SAF)


Scarring alopecia or “cicatricial alopecia” refers to a diverse group of rare disorders that destroy the hair follicle, replace it with scar tissue, and cause permanent hair loss.

About Cicatricial Alopecia:

There are several different types of cicatricial alopecia, generally classified as primary or secondary. In primary cicatricial alopecia, the hair follicle is the target of the destructive inflammatory process. In secondary cicatricial alopecia, destruction of the hair follicle is incidental to a non-follicle-directed process or external injury, such as severe infections, burns, radiation, or tumors.

Primary cicatricial alopecia is currently classified by the type of inflammatory cells seen on a scalp biopsy. The inflammatory cells may be primarily lymphocytes, neutrophils, or sometimes the inflammation has mixed cells.

The clinical course is highly variable and unpredictable. Hair loss may be slowly progressive over many years, without symptoms, and unnoticed for long periods. Or the hair loss may be rapidly destructive within months and associated with severe itching, pain and burning. The inflammation that destroys the follicle is below the skin surface and there is usually no “scar” seen on the scalp. Affected areas of the scalp may show little signs of inflammation, or have redness, scaling, increased or decreased pigmentation, pustules, or draining sinuses. Cicatricial alopecia occurs in otherwise healthy men and women of all ages, is not contagious, not hereditary, and is seen worldwide.

About SAF:

The Scarring Alopecia Foundation (SAF) was formed as a result of one person’s experience with scarring alopecia, or cicatricial alopecia. When the patient realized that little is known about such disorders, she decided, with the help of her doctor, to initiate a grassroots effort to raise funds to study the cicatricial alopecias.

All SAF’s work is in line with its mission of providing education and patient support, raising public awareness, and advancing and promoting research. SAF’s leadership believes that in return for accomplishing our mission, SAF will improve the care of patients with inflammatory, scarring hair disorders.

SAF offers patient support in the following ways:

  • In-person support group meetings throughout the United States
  • Online, anonymous patient forum
  • Frequent communications recapping the latest in cicatricial alopecia and promoting positive, inspiring member stories
  • Providing accurate, medically-vetted information free to patients through a newly redesigned website
  • Physician Referral Listing
  • Promotion of clinical trials, research studies, and patient surveys
  • Highlights of impactful research to our 5,000-member patient community
  • Grants for research
  • Opportunity to serve on Medical & Scientific Advisory Board and network with other leading hair researchers
  • Present at biennial Patient Conference or through one of the online education modules

Since 2005, SAF has grown from a group of seven patients to include more than 5,000 patients who have received information through the patient support program, support groups, in-person meetings, and informative online resources. SAF has been contacted by individuals with cicatricial alopecia or medical professions from 91 countries, all 50 states, Washington, DC and Puerto Rico.

Contact SAF by visiting http://scarringalopecia.org or emailing info@scarringalopecia.org.