OBSOLETE: AymÚ-Gripp syndrome

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Overview

Aymé-Gripp syndrome is a rare genetic condition that affects many parts of the body, including the brain, eyes, ears, and overall development. It is also sometimes called MAF-related syndrome, because it is caused by changes (mutations) in a gene called MAF. The condition was first described in medical literature and is listed as 'obsolete' in some databases because it has been reclassified or merged with a broader understanding of MAF-related disorders. However, the features of the condition remain well recognized by specialists. People with Aymé-Gripp syndrome typically have intellectual disability, meaning they may learn more slowly than their peers and need extra support in school and daily life. Many also have cataracts (clouding of the lens in the eye) from a very young age, hearing loss, and distinctive facial features. Seizures can also occur in some individuals. Growth may be slower than expected, and some people have heart or skeletal differences. There is currently no cure for Aymé-Gripp syndrome. Treatment focuses on managing each symptom as it appears. This may include surgery for cataracts, hearing aids, seizure medications, and educational support programs. A team of different specialists usually works together to provide the best care possible.

Key symptoms:

Intellectual disability or learning difficultiesCataracts (cloudy lenses in the eyes) present from birth or early childhoodHearing lossDistinctive facial features (such as a broad forehead or widely spaced eyes)SeizuresSlow growth or short statureHeart defects in some individualsSkeletal differences such as joint problemsFeeding difficulties in infancyDelayed speech and language development

Inheritance

Autosomal dominant

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

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: AymÚ-Gripp syndrome.

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No actively recruiting trials found for OBSOLETE: AymÚ-Gripp syndrome at this time.

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Search ClinicalTrials.gov ↗Join the OBSOLETE: AymÚ-Gripp syndrome community →

No specialists are currently listed for OBSOLETE: AymÚ-Gripp 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

Travel Grants

No travel grants are currently matched to OBSOLETE: AymÚ-Gripp syndrome.

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Community

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Latest news about OBSOLETE: AymÚ-Gripp syndrome

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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.What genetic testing do you recommend to confirm the diagnosis, and how long will results take?,Which specialists should be part of my child's care team, and how often should we see each one?,What are the early signs that my child's seizures or vision may be getting worse?,Are there any clinical trials or research studies we could participate in?,What educational and therapy services should we start as soon as possible?,What should we do in a seizure emergency, and when should we call 911?,Are other family members at risk, and should they be tested?

Common questions about OBSOLETE: AymÚ-Gripp syndrome

What is OBSOLETE: AymÚ-Gripp syndrome?

Aymé-Gripp syndrome is a rare genetic condition that affects many parts of the body, including the brain, eyes, ears, and overall development. It is also sometimes called MAF-related syndrome, because it is caused by changes (mutations) in a gene called MAF. The condition was first described in medical literature and is listed as 'obsolete' in some databases because it has been reclassified or merged with a broader understanding of MAF-related disorders. However, the features of the condition remain well recognized by specialists. People with Aymé-Gripp syndrome typically have intellectual di

How is OBSOLETE: AymÚ-Gripp syndrome inherited?

OBSOLETE: AymÚ-Gripp syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does OBSOLETE: AymÚ-Gripp syndrome typically begin?

Typical onset of OBSOLETE: AymÚ-Gripp syndrome is neonatal. Age of onset can vary across affected individuals.