Cowden syndrome

Last reviewed

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ORPHA:201OMIM:158350Q85.8
Who is this for?
Show terms as
2FDA treatments2Specialists8Treatment centers6Financial resources

Where are you in your journey?

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

Cowden Syndrome is treated with 2 medications in our database, including WELIREG, BELRAPZO. 2 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Merck, Eagle. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Cowden Syndrome treatment below.

Also known as:

Clinical phenotype terms— hover any for plain English:

Abnormal penis morphologyHP:0000036Furrowed tongueHP:0000221Cavernous hemangiomaHP:0001048
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

1 event
May 2015Natural History Study of Individuals With Autism and Germline Heterozygous PTEN Mutations

Boston Children's Hospital

TrialRECRUITING

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

Treatments

2 available

WELIREG

belzutifan· Merck

* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Not Publicly Available * RxBIN, PCN, and Group numbers: Not Publi

BELRAPZO

bendamustine hydrochloride· Eagle

* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: For specific patient support program eligibility requirements, pl

No actively recruiting trials found for Cowden syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the Cowden syndrome community →

Specialists

2 foundView all specialists →
SM
Sharon A Savage, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 7 active trials
LP
Laura C Hernández Ramírez, MD, PhD
Mexico City, Mexico City
Specialist

Rare Disease 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

6 grants

The Merck Co-pay Assistance Program

Merck

Eligible patients must be U.S. residents with private insurance covering KEYTRUDA for an FDA-approved indication. The program excludes individuals with government-funded insurance and requires patients to pay the first $25 of their co-pay per administration.

Apply ↗Up to $25,000

Merck Patient Assistance Program

Merck

The Merck Patient Assistance Programs provide access to a wide range of Merck medicines and vaccines for patients who meet specific criteria. The provided text lists eligible medications but does not specify exact income thresholds or travel requirements.

Apply ↗

Merck Patient Assistance Program (NeedyMeds)

NeedyMeds

Apply ↗

The Merck Co-pay Assistance Program Enrollment Form

Merck

Apply ↗

The Merck Access Program

Merck

The program is available to U.S. residents diagnosed with Pulmonary Arterial Hypertension (Group 1) who meet clinical safety requirements including a minimum platelet count. Patients must undergo a benefits investigation and provide authorization for the disclosure of health information to determine eligibility for financial assistance or support services.

Apply ↗

WELIREG Treatment Resources

Merck

Eligibility is for adults with advanced clear cell renal cell carcinoma (RCC) who have previously been treated with a PD-1/PD-L1 inhibitor and a VEGF-TKI. The program provides links to third-party resources that may assist with daily challenges such as transportation, housing, and food.

Apply ↗

Community

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Latest news about Cowden syndrome

Disease timeline:

New recruiting trial: Natural History Study of Individuals With Autism and Germline Heterozygous PTEN Mutations

A new clinical trial is recruiting patients for Cowden syndrome

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.

Common questions about Cowden syndrome

What is Cowden syndrome?

Cowden Syndrome is treated with 2 medications in our database, including WELIREG, BELRAPZO. 2 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Merck, Eagle. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Cowden Syndrome treatment below.

How is Cowden syndrome inherited?

Cowden syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Which specialists treat Cowden syndrome?

2 specialists and care centers treating Cowden syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Cowden syndrome?

2 FDA-approved treatments are currently tracked on UniteRare for Cowden syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.