Overview
X-linked intellectual disability, Raymond type is an extremely rare genetic condition that primarily affects males. It is caused by a change (mutation) in a gene located on the X chromosome, which is one of the two sex chromosomes. Because males have only one X chromosome, a single altered copy of the gene is enough to cause the condition. The main feature of this condition is intellectual disability, which means that affected individuals have significant difficulties with learning, reasoning, and problem-solving compared to others their age. The severity of intellectual disability can vary. Additional features may include developmental delays, meaning children may be slower to reach milestones such as sitting, walking, and talking. Some individuals may also have behavioral challenges or other neurological symptoms. Because this condition is so rare, there is very limited information available about the full range of symptoms and the best approaches to treatment. Currently, there is no cure. Management focuses on supportive care, including special education services, speech therapy, occupational therapy, and behavioral support to help affected individuals reach their full potential. Early intervention programs are considered important for improving outcomes. Families are encouraged to work closely with a team of specialists to create an individualized care plan.
Key symptoms:
Intellectual disabilityDelayed speech and language developmentDelayed motor milestones such as sitting and walkingLearning difficultiesBehavioral challengesDifficulty with problem-solving and reasoningPossible difficulties with social interaction
X-linked recessive
Carried on the X chromosome; typically affects males more than females
Infantile
Begins in infancy, roughly 1 month to 2 years old
Treatments
No FDA-approved treatments are currently listed for X-linked intellectual disability, Raymond type.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for X-linked intellectual disability, Raymond type at this time.
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Specialists
View all specialists →No specialists are currently listed for X-linked intellectual disability, Raymond type.
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 X-linked intellectual disability, Raymond type.
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.What is the specific genetic change causing my child's condition, and has it been fully identified?,What therapies and early intervention services do you recommend starting right away?,How severe is the intellectual disability likely to be, and what can we expect as my child grows?,Are there any other medical issues we should screen for related to this condition?,What educational supports should we request from our school district?,Is genetic counseling recommended for other family members, especially female relatives who may be carriers?,Are there any clinical trials or research studies we could participate in?
Common questions about X-linked intellectual disability, Raymond type
What is X-linked intellectual disability, Raymond type?
X-linked intellectual disability, Raymond type is an extremely rare genetic condition that primarily affects males. It is caused by a change (mutation) in a gene located on the X chromosome, which is one of the two sex chromosomes. Because males have only one X chromosome, a single altered copy of the gene is enough to cause the condition. The main feature of this condition is intellectual disability, which means that affected individuals have significant difficulties with learning, reasoning, and problem-solving compared to others their age. The severity of intellectual disability can vary.
How is X-linked intellectual disability, Raymond type inherited?
X-linked intellectual disability, Raymond type follows a x-linked recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does X-linked intellectual disability, Raymond type typically begin?
Typical onset of X-linked intellectual disability, Raymond type is infantile. Age of onset can vary across affected individuals.