Autoimmune disease with skin involvement

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ORPHA:315350
Who is this for?
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12Specialists8Treatment centers

Where are you in your journey?

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

Autoimmune disease with skin involvement (Orphanet code 315350) is a broad category that refers to a group of rare conditions in which the body's immune system mistakenly attacks its own skin and sometimes other organs. In these diseases, the immune system, which normally protects you from infections, becomes confused and produces antibodies or immune cells that target healthy skin tissue. This can lead to a wide range of skin problems including rashes, blisters, thickening or hardening of the skin, color changes, and sores that may be slow to heal. The symptoms and severity can vary greatly depending on the specific type of autoimmune skin disease. Some people experience mild patches of irritated skin, while others may have widespread blistering or scarring that significantly affects their quality of life. In many cases, the skin problems come and go in flares, meaning there are periods when symptoms get worse and periods of improvement. Some of these conditions can also affect internal organs such as the kidneys, lungs, joints, or blood vessels, making regular monitoring important. Treatment typically focuses on calming the overactive immune system and managing symptoms. This may include topical creams, oral medications that suppress the immune system (such as corticosteroids, methotrexate, or mycophenolate), and newer biologic therapies. While many of these conditions cannot be cured, treatments have improved significantly and can help most patients achieve good control of their symptoms and maintain a reasonable quality of life.

Key symptoms:

Skin rashes that come and goBlisters on the skin or mucous membranesItchy or painful skin patchesSkin thickening or hardeningSores or ulcers on the skinRedness and swelling of the skinSensitivity to sunlightHair loss or thinningChanges in skin colorScarring from skin lesionsJoint pain or swellingFatigue and low energyMouth soresDry eyes or dry mouthNail changes or damage

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

4 events
Jun 2025A Study to Assess Safety, Cellular Kinetics and Exploratory Efficacy of Rapcabtagene Autoleucel in Rheumatoid Arthritis and Sjogren's Disease

Novartis Pharmaceuticals — PHASE1, PHASE2

TrialRECRUITING
Dec 2024Home Based Clinical Management of Interstitial Lung Disease in Systemic Rheumatic Diseases

Oslo University Hospital — NA

TrialRECRUITING
Mar 2021Definition of Autonomic Nervous System Involvement in Patients With Multiple Sclerosis

Istituti Clinici Scientifici Maugeri SpA — NA

TrialRECRUITING
Apr 2015Characterization of Diseases With Salivary Gland Involvement

National Institute of Dental and Craniofacial Research (NIDCR)

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Autoimmune disease with skin involvement.

View clinical trials →

No actively recruiting trials found for Autoimmune disease with skin involvement at this time.

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

Search ClinicalTrials.gov ↗Join the Autoimmune disease with skin involvement community →

Specialists

12 foundView all specialists →
AM
Adeline Vanderver, MD
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 4 active trials1 Autoimmune disease with skin involvement publication
KM
Keith Sullivan, MD
Specialist
PI on 3 active trials
SP
Sonia ALAMOWITCH, PU-PH
Specialist
PI on 1 active trial
AM
Adela Cardones, MD
DURHAM, NC
Specialist
PI on 2 active trials
VM
Vincenzo Provitera, MD
Specialist
PI on 1 active trial
HM
Hermine Brunner, MD
CINCINNATI, OH
Specialist
PI on 1 active trial
MP
Margaret E Beach, P.A.-C
Specialist
PI on 1 active trial
JD
Julian Luetkens, Prof. Dr.
Specialist
PI on 1 active trial
SD
Simon Petzinna, Dr.
Specialist
PI on 1 active trial
EM
Ender Salbas, MD
Specialist
PI on 1 active trial
LM
Line R Knudsen, RN, MCN
Specialist
PI on 1 active trial
AD
Alexander Isaak, PD Dr.
Specialist
PI on 1 active trial

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 Autoimmune disease with skin involvement.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Autoimmune disease with skin involvementForum →

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Latest news about Autoimmune disease with skin involvement

Disease timeline:

New recruiting trial: Characterization of Diseases With Salivary Gland Involvement

A new clinical trial is recruiting patients for Autoimmune disease with skin involvement

New recruiting trial: Home Based Clinical Management of Interstitial Lung Disease in Systemic Rheumatic Diseases

A new clinical trial is recruiting patients for Autoimmune disease with skin involvement

New recruiting trial: A Study to Assess Safety, Cellular Kinetics and Exploratory Efficacy of Rapcabtagene Autoleucel in Rheumatoid Arthritis and Sjogren's Disease

A new clinical trial is recruiting patients for Autoimmune disease with skin involvement

New recruiting trial: Definition of Autonomic Nervous System Involvement in Patients With Multiple Sclerosis

A new clinical trial is recruiting patients for Autoimmune disease with skin involvement

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 specific type of autoimmune skin disease do I have, and how was it diagnosed?,What treatment options are available, and what are the risks and benefits of each?,How will we monitor for side effects of my medications?,Are there things I should avoid that could trigger a flare, such as sun exposure or certain foods?,Could this condition affect other parts of my body besides my skin?,Are there any clinical trials or newer treatments I should know about?,Should my family members be screened or tested for this condition?

Common questions about Autoimmune disease with skin involvement

What is Autoimmune disease with skin involvement?

Autoimmune disease with skin involvement (Orphanet code 315350) is a broad category that refers to a group of rare conditions in which the body's immune system mistakenly attacks its own skin and sometimes other organs. In these diseases, the immune system, which normally protects you from infections, becomes confused and produces antibodies or immune cells that target healthy skin tissue. This can lead to a wide range of skin problems including rashes, blisters, thickening or hardening of the skin, color changes, and sores that may be slow to heal. The symptoms and severity can vary greatly

How is Autoimmune disease with skin involvement inherited?

Autoimmune disease with skin involvement follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Which specialists treat Autoimmune disease with skin involvement?

12 specialists and care centers treating Autoimmune disease with skin involvement are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.