Overview
Schöpf-Schulz-Passarge syndrome (SSPS) is a very rare inherited condition that mainly affects the skin, teeth, nails, sweat glands, and eyes. It belongs to a group of conditions called ectodermal dysplasias, which means the parts of the body that develop from a layer of tissue called the ectoderm do not form or work properly. The syndrome is also sometimes referred to by the abbreviation SSPS. The most recognizable feature of SSPS is the development of small fluid-filled cysts on the eyelids, called eyelid cysts or apocrine hidrocystomas. People with this condition often also have missing or abnormally shaped teeth, thin or brittle nails, reduced ability to sweat, and dry or thickened skin on the palms and soles. Some individuals develop benign (non-cancerous) or, in some cases, cancerous skin tumors over time, so regular skin monitoring is important. There is currently no cure for SSPS. Treatment focuses on managing individual symptoms. This may include dental care and implants for missing teeth, eye care for eyelid cysts, skin moisturizers, and regular skin cancer screenings. A team of specialists working together gives the best results. With careful monitoring and symptom management, many people with SSPS can lead fulfilling lives.
Also known as:
Key symptoms:
Small fluid-filled cysts on the eyelids (apocrine hidrocystomas)Missing or abnormally shaped teeth (hypodontia or oligodontia)Thin, brittle, or abnormally shaped nailsReduced or absent sweating (hypohidrosis)Thickened, rough skin on the palms and soles (palmoplantar keratoderma)Dry skinSparse or thin hairBenign skin tumors (such as trichoepitheliomas or sebaceous gland tumors)Increased risk of certain skin cancersSensitivity to heat due to reduced sweating
Clinical phenotype terms (12)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Schöpf-Schulz-Passarge syndrome.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Schöpf-Schulz-Passarge syndrome.
Community
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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.Which specialists should be part of my care team, and how often should I see each one?,How often should I have skin checks, and what signs of skin cancer should I watch for?,What are my options for replacing missing teeth, and when should we start dental treatment?,Should my family members be tested for the WNT10A gene change?,How can I safely manage heat and exercise given my reduced ability to sweat?,Are there any clinical trials or research studies I could participate in?,What support resources or patient communities are available for people with ectodermal dysplasias?
Common questions about Schöpf-Schulz-Passarge syndrome
What is Schöpf-Schulz-Passarge syndrome?
Schöpf-Schulz-Passarge syndrome (SSPS) is a very rare inherited condition that mainly affects the skin, teeth, nails, sweat glands, and eyes. It belongs to a group of conditions called ectodermal dysplasias, which means the parts of the body that develop from a layer of tissue called the ectoderm do not form or work properly. The syndrome is also sometimes referred to by the abbreviation SSPS. The most recognizable feature of SSPS is the development of small fluid-filled cysts on the eyelids, called eyelid cysts or apocrine hidrocystomas. People with this condition often also have missing or
How is Schöpf-Schulz-Passarge syndrome inherited?
Schöpf-Schulz-Passarge syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Schöpf-Schulz-Passarge syndrome?
12 specialists and care centers treating Schöpf-Schulz-Passarge syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.