SLC35A2-CDG

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ORPHA:356961OMIM:300896E77.8
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16Specialists8Treatment centers

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

SLC35A2-CDG, also known as SLC35A2-congenital disorder of glycosylation, is a rare genetic condition that affects how the body adds sugar molecules to proteins and fats — a process called glycosylation. This process is essential for many body functions, and when it doesn't work properly, it can cause problems in multiple organs, especially the brain. Most children with SLC35A2-CDG experience seizures that often begin in infancy, along with developmental delays and intellectual disability. Many children have low muscle tone (feeling floppy), difficulty feeding, and may show unusual eye movements. Some children also have distinctive facial features, skeletal abnormalities, and problems with growth. The severity can vary widely from person to person — some individuals are more mildly affected while others have significant challenges. There is currently no cure for SLC35A2-CDG. Treatment focuses on managing symptoms, particularly controlling seizures with anti-epileptic medications. Some patients have shown improvement with oral galactose supplementation, which may help improve the glycosylation process. Physical therapy, occupational therapy, and speech therapy are important parts of ongoing care. Research into better treatments is actively ongoing, and early diagnosis can help families access supportive care sooner.

Also known as:

Key symptoms:

Seizures, often starting in infancyDevelopmental delayIntellectual disabilityLow muscle tone (floppiness)Difficulty feedingPoor growth or failure to thriveAbnormal eye movementsSpeech and language delaysDifficulty walking or delayed motor milestonesUnusual facial featuresSkeletal abnormalitiesBrain abnormalities seen on MRIShort statureBlood clotting problemsLiver function abnormalities

Clinical phenotype terms (50)— hover any for plain English
Abnormality of the immune systemHP:0002715
Inheritance

X-linked dominant

Carried on the X chromosome; a single copy can cause the condition

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for SLC35A2-CDG.

View clinical trials →

No actively recruiting trials found for SLC35A2-CDG at this time.

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

Search ClinicalTrials.gov ↗Join the SLC35A2-CDG community →

Specialists

16 foundView all specialists →
EP
Eva Morava-Kozicz, MD, PhD
ROCHESTER, MN
Specialist
PI on 7 active trials
JI
Jakub Idkowiak
Specialist
1 SLC35A2-CDG publication
JW
Jian-She Wang
PORTLAND, OR
Specialist
1 SLC35A2-CDG publication
KA
Kuerbanjiang Abuduxikuer
Specialist
1 SLC35A2-CDG publication
RK
Rebeka Kodríková
Specialist
1 SLC35A2-CDG publication
ZP
Zuzana Pakanová
Specialist
1 SLC35A2-CDG publication
MK
Maroš Krchňák
Specialist
1 SLC35A2-CDG publication
TH
Tomáš Honzík
Specialist
1 SLC35A2-CDG publication
PV
Pieter Vermeersch
Specialist
1 SLC35A2-CDG publication
FF
François Foulquier
Specialist
1 SLC35A2-CDG publication
WM
Willy Morelle
Specialist
1 SLC35A2-CDG publication
JS
Johannes V Swinnen
Specialist
1 SLC35A2-CDG publication
DV
Dries Verdegem
Specialist
1 SLC35A2-CDG publication
AP
Andrea Jáñez Pedrayes
Specialist
1 SLC35A2-CDG publication
BG
Bart Ghesquière
Specialist
1 SLC35A2-CDG publication
SC
Sam De Craemer
Specialist
1 SLC35A2-CDG publication

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 SLC35A2-CDG.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about SLC35A2-CDG

No recent news articles for SLC35A2-CDG.

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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.How severe is my child's form of SLC35A2-CDG, and what can we expect in terms of development?,Would oral galactose supplementation be appropriate, and how would we monitor its effectiveness?,What is the best seizure management plan, and when should we go to the emergency room for a seizure?,What therapies should we start right away to support my child's development?,Are there any clinical trials or research studies we should consider enrolling in?,How often should we have blood work and other monitoring tests done?,Should other family members be tested, and what is the chance of this happening in a future pregnancy?

Common questions about SLC35A2-CDG

What is SLC35A2-CDG?

SLC35A2-CDG, also known as SLC35A2-congenital disorder of glycosylation, is a rare genetic condition that affects how the body adds sugar molecules to proteins and fats — a process called glycosylation. This process is essential for many body functions, and when it doesn't work properly, it can cause problems in multiple organs, especially the brain. Most children with SLC35A2-CDG experience seizures that often begin in infancy, along with developmental delays and intellectual disability. Many children have low muscle tone (feeling floppy), difficulty feeding, and may show unusual eye movemen

How is SLC35A2-CDG inherited?

SLC35A2-CDG follows a x-linked dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does SLC35A2-CDG typically begin?

Typical onset of SLC35A2-CDG is neonatal. Age of onset can vary across affected individuals.

Which specialists treat SLC35A2-CDG?

16 specialists and care centers treating SLC35A2-CDG are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.