Familial reactive perforating collagenosis

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:79147OMIM:216700L87.1
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Familial reactive perforating collagenosis (FRPC) is a rare inherited skin condition where the body abnormally pushes collagen — a protein that gives skin its structure — up through the outer layers of the skin. This process is called 'transepidermal elimination,' which simply means the skin is trying to get rid of collagen fibers by pushing them out through the surface. The condition is also sometimes called familial perforating collagenosis or reactive perforating collagenosis (familial type). The main sign of this disease is the appearance of small, firm, dome-shaped bumps on the skin, usually with a central plug or crater filled with dark, keratinous (skin-protein) material. These bumps most often appear on the arms, legs, and trunk, and they can be very itchy. The bumps tend to come and go, and they may be triggered by minor skin injuries like scratches or insect bites — a reaction known as the Koebner phenomenon. FRPC usually begins in childhood or infancy and follows a lifelong course with flares and remissions. There is no cure, but treatments focus on relieving itching and reducing the number of bumps. Options include topical creams, retinoids, antihistamines, and light therapy. The condition is generally not life-threatening, but it can significantly affect quality of life due to persistent itching and the visible appearance of skin lesions.

Key symptoms:

Small, firm, dome-shaped bumps on the skinCentral dark plug or crater in the middle of each bumpIntense itching of the affected skin areasBumps most commonly on arms, legs, hands, and trunkNew bumps triggered by scratching, insect bites, or minor skin injuriesBumps that come and go over time (flares and remissions)Scarring or darkening of skin after bumps healSkin lesions that may worsen in cold weatherKoebner phenomenon — new lesions forming at sites of skin trauma

Clinical phenotype terms (20)— hover any for plain English
Maculopapular exanthemaHP:0040186Spotty hyperpigmentationHP:0005585Abnormal epidermal morphologyHP:0011124Increased number of elastic fibers in the dermisHP:0025164Abnormal cutaneous collagen fibril morphologyHP:0031512Hyperkeratotic papuleHP:0045059Abnormality of the periorbital regionHP:0000606Abnormal scalp morphologyHP:0001965Crusting erythematous dermatitisHP:0007473PerifolliculitisHP:0012322Abnormal oral mucosa morphologyHP:0011830Dermatological manifestations of systemic disordersHP:0001005
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Familial reactive perforating collagenosis.

View clinical trials →

No actively recruiting trials found for Familial reactive perforating collagenosis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Familial reactive perforating collagenosis community →

No specialists are currently listed for Familial reactive perforating collagenosis.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Familial reactive perforating collagenosis.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Familial reactive perforating collagenosisForum →

No community posts yet. Be the first to share your experience with Familial reactive perforating collagenosis.

Start the conversation →

Latest news about Familial reactive perforating collagenosis

No recent news articles for Familial reactive perforating collagenosis.

Follow this condition to be notified when news becomes available.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What type of skin biopsy or genetic testing do you recommend to confirm the diagnosis?,Which treatments are most likely to help reduce my itching and the number of bumps?,Are there specific triggers I should avoid to prevent flares?,Should other family members be evaluated or tested for this condition?,Is there any ongoing research or clinical trial I could participate in?,What should I do if a skin lesion becomes infected or does not heal?,Are there any support groups or patient communities for people with this condition?

Common questions about Familial reactive perforating collagenosis

What is Familial reactive perforating collagenosis?

Familial reactive perforating collagenosis (FRPC) is a rare inherited skin condition where the body abnormally pushes collagen — a protein that gives skin its structure — up through the outer layers of the skin. This process is called 'transepidermal elimination,' which simply means the skin is trying to get rid of collagen fibers by pushing them out through the surface. The condition is also sometimes called familial perforating collagenosis or reactive perforating collagenosis (familial type). The main sign of this disease is the appearance of small, firm, dome-shaped bumps on the skin, usu

How is Familial reactive perforating collagenosis inherited?

Familial reactive perforating collagenosis follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Familial reactive perforating collagenosis typically begin?

Typical onset of Familial reactive perforating collagenosis is childhood. Age of onset can vary across affected individuals.