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The Scarring Alopecia Foundation is the world's only patient advocacy organization exclusively dedicated to advancing research, supporting patients, and providing education for scarring alopecia.

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Impact in Motion Final

Impact In Motion is our 2024 annual fundraising campaign with the sole purpose of raising $60,000 from SAF’s community of patients, medical professionals, friends, and supporters. This funding will enable SAF to continue advancing research, leading educational initiatives, supporting patients, and advocating for those affected by scarring alopecia.

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2025 Patient Conference

SAF hosts patient conferences that bring together individuals affected by all forms of scarring alopecia, along with leading medical experts, researchers, and industry. These conferences provide a supportive and informative environment where patients can learn about the latest advancements in research and treatments, participate in breakout meetings, and hear inspiring stories from others who have similar experiences.

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NEW ICD-10-CM CODES-1

A Letter from our Executive Director: A Major Milestone in the Care of Scarring Alopecia. The Centers for Disease Control and Prevention (CDC) has approved the ICD-10-CM codes for Central Centrifugal Cicatricial Alopecia (CCCA) and Frontal Fibrosing Alopecia (FFA), which will go into effect in October 2024. The codes, L66.81 and L66.12, are the first of its kind and the result of tireless advocacy from patients, dedicated healthcare providers, and strong support from professional dermatologic societies and organizations.

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Types of Scarring Alopecia

Title

Summary

Alopecia Mucinosa

Alopecia mucinosa, also known as follicular mucinosis, is a rare inflammatory condition in which a jelly-like substance (mucin) builds up and deposits around hair roots, resulting in degeneration of the follicles.

Central Centrifugal Cicatricial Alopecia

Central Centrifugal Cicatricial Alopecia (CCCA) is part of a group of disorders known as cicatricial or scarring alopecias, which destroy hair follicles, replace them with scar tissue, and cause permanent hair loss.

Classic Pseudopelade

Classic Pseudopelade (Brocq) is a rare type of scarring hair loss, meaning that the hair loss in affected areas is permanent.

Dissecting Cellulitis

Dissecting cellulitis is a rare and long-lasting condition that affects the hair follicles on the scalp. It's also called dissecting folliculitis or perifolliculitis capitis abscedens et suffodiens.

Discoid Lupus Erythematosus

Discoid Lupus Erythematosus (DLE) is a type of chronic cutaneous lupus erythematosus, an autoimmune disorder that primarily affects the skin and hair follicles.

Erosive Pustular Dermatosis

Erosive pustular dermatosis (EPD) of the scalp can lead to scarring alopecia. This condition causes chronic inflammation, which can damage hair follicles and result in permanent hair loss and scarring in the affected areas.

Folliculitis Decalvans

Folliculitis decalvans belongs to a group of disorders called cicatricial or scarring alopecias that destroy the hair follicle, replace it with scar tissue, and eventually causes permanent hair loss.

Frontal Fibrosing Alopecia

Frontal Fibrosing Alopecia (FFA) is an inflammatory skin disorder with progressive hair loss (alopecia) due to the destruction of hair follicles. The hair loss is centered around the eyebrows and front hairline and can be permanent or scarring in nature.

Folliculitis Keloidalis

Folliculitis Keloidalis, also known as Acne Keloidalis Nuchae (AKN), is a chronic inflammatory condition that primarily affects the hair follicles on the nape of the neck and the occipital scalp.

Graham Little Syndrome

Graham-Little Syndrome, also known as Graham-Little-Piccardi-Lassueur Syndrome, is a rare type of scarring alopecia that primarily affects women, which results in permanent hair loss in affected areas of the scalp due to the destruction of hair follicles and replacement by scar tissue.

Keratosis Follicularis Spinulosa Decalvans

Keratosis Follicularis Spinulosa Decalvans (KFSD) is a rare genetic disorder that primarily affects the skin and hair. It is characterized by the development of small, spiny papules due to the plugging of hair follicles with keratin, leading to progressive hair loss, particularly on the scalp, where it results in scarring alopecia.

Lichen Planopilaris

Lichen planopilaris (LPP) is a form of alopecia (hair loss) which can be cicatricial (scarring) and permanent in nature. While the cause is unknown, it is likely a primary inflammatory process induced by genetic and/or environmental factors, rather than secondary to infections, burns, surgical scars, caustic hair products, etc.

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