Overview
Prader-Willi-like syndrome is a rare genetic condition that shares many features with classic Prader-Willi syndrome but is caused by different genetic changes. People with this condition typically experience low muscle tone (hypotonia) in infancy, feeding difficulties early in life that later transition to excessive hunger and obesity, intellectual disability or learning difficulties, and behavioral challenges. Short stature and hormonal problems are also common. The term 'Prader-Willi-like' is used because the clinical picture closely resembles Prader-Willi syndrome, yet standard genetic testing for Prader-Willi syndrome (which looks at chromosome 15) comes back normal. Instead, changes in other genes — most notably SIM1, MAGEL2, and others — have been identified as causes. Some cases are linked to deletions or mutations on chromosome 6 involving the SIM1 gene, which plays a role in brain development and appetite regulation. There is currently no cure for Prader-Willi-like syndrome. Treatment focuses on managing symptoms, including growth hormone therapy for short stature, dietary management to prevent severe obesity, behavioral support, and therapies to address developmental delays. Early intervention with physical therapy, speech therapy, and occupational therapy can significantly improve outcomes. A team of specialists working together provides the best care for affected individuals.
Also known as:
Key symptoms:
Low muscle tone in infancy (floppy baby)Feeding difficulties in early lifeExcessive hunger and overeating starting in childhoodObesity that is difficult to controlIntellectual disability or learning difficultiesDelayed speech and language developmentDelayed motor milestones like sitting and walkingShort statureSmall hands and feetBehavioral problems including tantrums and stubbornnessHormonal imbalancesUnderdeveloped genitals in malesSleep problemsMild facial differencesDifficulty regulating emotions
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
10 eventsData sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Prader-Willi-like syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Prader-Willi-like syndrome at this time.
New trials open frequently. Follow this disease to get notified.
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
Financial Resources
1 resourcesDUOPA
AbbVie Inc.
DUOPA Patient Support (AbbVie Patient Assistance)
Travel Grants
No travel grants are currently matched to Prader-Willi-like syndrome.
Community
No community posts yet. Be the first to share your experience with Prader-Willi-like syndrome.
Start the conversation →Latest news about Prader-Willi-like syndrome
1 articlesCaregiver 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 genetic change is causing my child's condition, and does it affect treatment options?,Is growth hormone therapy appropriate for my child, and when should it start?,What is the best dietary plan to manage hunger and prevent obesity?,What early intervention therapies should we start, and how often?,Are there any clinical trials or new treatments being studied for this condition?,What behavioral strategies work best for managing food-seeking behavior and emotional outbursts?,What should we watch for as my child gets older in terms of health complications?
Common questions about Prader-Willi-like syndrome
What is Prader-Willi-like syndrome?
Prader-Willi-like syndrome is a rare genetic condition that shares many features with classic Prader-Willi syndrome but is caused by different genetic changes. People with this condition typically experience low muscle tone (hypotonia) in infancy, feeding difficulties early in life that later transition to excessive hunger and obesity, intellectual disability or learning difficulties, and behavioral challenges. Short stature and hormonal problems are also common. The term 'Prader-Willi-like' is used because the clinical picture closely resembles Prader-Willi syndrome, yet standard genetic tes
At what age does Prader-Willi-like syndrome typically begin?
Typical onset of Prader-Willi-like syndrome is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Prader-Willi-like syndrome?
15 specialists and care centers treating Prader-Willi-like 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 Prader-Willi-like syndrome?
1 patient support program are currently tracked on UniteRare for Prader-Willi-like syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.