NON RARE IN EUROPE: Peyronie syndrome

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ORPHA:2870N48.6
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2FDA treatments8Treatment centers1Financial resources

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Overview

Peyronie syndrome, also known as Peyronie disease or penile fibromatosis (Orphanet code 2870; ICD-10: N48.6), is a connective tissue disorder affecting the penis. It is characterized by the formation of fibrous plaques (scar tissue) within the tunica albuginea, the tough sheath surrounding the erectile tissue of the penis. These plaques can cause penile curvature, pain during erection, erectile dysfunction, and penile shortening or narrowing. The condition primarily affects the genitourinary system and can have significant psychological impact, including anxiety and depression related to sexual function. Peyronie disease typically presents in two phases: an acute inflammatory phase lasting 6 to 18 months, during which pain and progressive curvature develop, followed by a chronic stable phase where the plaque calcifies and the deformity stabilizes. The exact cause is not fully understood, but it is believed to result from repeated microtrauma to the penis during sexual activity, leading to abnormal wound healing in genetically susceptible individuals. Risk factors include age, family history, connective tissue disorders (such as Dupuytren contracture), diabetes, and certain lifestyle factors. Treatment options depend on disease phase and severity. During the acute phase, conservative management may include oral medications (such as pentoxifylline or potassium para-aminobenzoate), intralesional injections (collagenase Clostridium histolyticum is the only FDA-approved pharmacological treatment), and traction therapy. In the chronic stable phase with significant curvature or erectile dysfunction that impairs sexual function, surgical options include plication procedures, plaque incision or excision with grafting, or penile prosthesis implantation. This condition is classified as non-rare in Europe, with prevalence estimates suggesting it affects a notable proportion of adult men.

Also known as:

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Jun 2020

Lialda: FDA approved

Lialda (mesalamine) is indicated for the treatment of mildly to moderately active ulcerative colitis in pediatric patients weighing at least 24 kg.

FDAcompleted
Jan 2016

Cetylev: FDA approved

Indicated to prevent or lessen hepatic injury after ingestion of a potentially hepatotoxic quantity of acetaminophen in patients with acute ingestion or from repeated supratherapeutic ingestion

FDAcompleted

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

Treatments

2 available

Lialda

mesalamine; 5-aminosalicylic acid· Takeda Development Center Americas, Inc.Orphan Drug

Lialda (mesalamine) is indicated for the treatment of mildly to moderately active ulcerative colitis in pediatric patients weighing at least 24 kg.

Cetylev

acetylcysteine effervescent tablets for oral solution· Arbor Pharmaceuticals, Inc.Orphan Drug

Indicated to prevent or lessen hepatic injury after ingestion of a potentially hepatotoxic quantity of acetaminophen in patients with acute ingestion or from repeated supratherapeutic ingestion

No actively recruiting trials found for NON RARE IN EUROPE: Peyronie syndrome at this time.

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No specialists are currently listed for NON RARE IN EUROPE: Peyronie syndrome.

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

Financial Resources

1 resources
Lialda(mesalamine; 5-aminosalicylic acid)Takeda Development Center Americas, Inc.

Travel Grants

No travel grants are currently matched to NON RARE IN EUROPE: Peyronie syndrome.

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Latest news about NON RARE IN EUROPE: Peyronie syndrome

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Caregiver Resources

NORD Caregiver Resources

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

Mental Health Support

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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.

Common questions about NON RARE IN EUROPE: Peyronie syndrome

What is NON RARE IN EUROPE: Peyronie syndrome?

Peyronie syndrome, also known as Peyronie disease or penile fibromatosis (Orphanet code 2870; ICD-10: N48.6), is a connective tissue disorder affecting the penis. It is characterized by the formation of fibrous plaques (scar tissue) within the tunica albuginea, the tough sheath surrounding the erectile tissue of the penis. These plaques can cause penile curvature, pain during erection, erectile dysfunction, and penile shortening or narrowing. The condition primarily affects the genitourinary system and can have significant psychological impact, including anxiety and depression related to sexua

How is NON RARE IN EUROPE: Peyronie syndrome inherited?

NON RARE IN EUROPE: Peyronie syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does NON RARE IN EUROPE: Peyronie syndrome typically begin?

Typical onset of NON RARE IN EUROPE: Peyronie syndrome is adult. Age of onset can vary across affected individuals.

What treatment and support options exist for NON RARE IN EUROPE: Peyronie syndrome?

1 patient support program are currently tracked on UniteRare for NON RARE IN EUROPE: Peyronie syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.