Lymphangiomatosis & Gorham's Disease Alliance, Inc. (LGDA)
Cycle 1
Complex Lymphatic Anomalies (CLAs) are a group of rare diseases that are characterized by abnormal growth of lymphatic vessels that may involve multiple organ systems, including lung, spleen, soft tissue and bones. CLAs include: Gorham Stout Disease (GSD), Generalized Lymphatic Anomaly (GLA), Kaposiform Lymphangiomatosis (KLA) and Central Conducting Lymphatic Anomaly (CCLA).
Last updated 04/30/2025
Clinical
Disease Class
Bone diseases
Cardiac diseases
Developmental anomalies during embryogenesis
Gastroenterological diseases
Genetic diseases
Hepatic diseases
Immunological diseases
Neurological diseases
Respiratory diseases
Skin diseases
Urogenital diseases
Body Systems
Cardiovascular / Circulatory
Digestive
Hematopoietic / Lymphatic / Immune
Muscular / Skeletal
Nervous / Sensory
Renal / Urinary / Excretory
Reproductive
Respiratory
Organs
Blood
Bones
Breasts
Connective tissue / joints
Heart
Intestines
Kidneys
Liver
Lungs
Penis
Skin
Stomach
Testes
Vagina
Vulva
Known Genetic Link
Yes, one or more genes directly cause the condition
causative_genes
ARAF
BRAF
CBL
FOXC2
GBA
GBE1
HRAS
KRAS
NRAS
PIEZO1
PIK3CA
PTPN11
RAF1
RIT1
SOS1
contributory_genes
None specified / unknown
Type of Inheritance
De novo
Newborn Screening
Not applicable
Disease Mechanism(s)
Unknown
Age of Onset
Adolescence (12-17)
Early childhood (age 1+-5)
Infancy (age 0-1)
Middle childhood (6-11)
Average Age at Diagnosis
Middle childhood (6-11)
Life Expectancy
Adolescence (12-17)
Adulthood (age 18-64)
Affected Sex(es)
None
National Prevalence
101-1000
Global Prevalence
1001-10000
National Incidence
Less than 10
Global Incidence
Less than 10
Symptoms / Phenotypes
abdominal swelling
abnormal brain features
anxiety
ascites
balance problems
bone break / fracture
bone pain
breathing difficulties
cardiac abnormalities
CSF leak
diarrhea
edema
fever
malnutrition
pain, abdominal
pain, chest
pleural effusion
protein-losing enteropathy
vomiting / nausea
Biomarkers
Diagnostic
· Angiopoietin 2 (Ang2)
Monitoring
· Angiopoietin 2 (Ang2)
Existing Therapies
Off-Label Drug Use
Organizational & Research
Cell Lines
None
Cell Lines, Institution
None
Cell Lines, share
N/A
Disease Model, share
N/A
Clinical Trial Role
Not specified
Biobank, Institution
None
Center of Excellence, Institution
None
Registry
Yes, we have a registry that we created
Data Collected, Registry
Clinical data
Electronic health records/electronic medical records
Genetic data
Imaging data
Longitudinal natural history data
Medication usage
Patient contact info
Patient-reported data
Data Entered by, Registry
Patients
Platform, Registry
IAMRARE
Natural History Study
Yes, we have collaborated on a natural history study
Data Collected, Natural History Study
Electronic health records/electronic medical records
Genetic data
Medication usage
Retrospective data
Platform, Natural History Study
AllStripes
FDA Patient Listening Session
No
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
No, we do not have any ICD codes
Diagnostic Guidelines
In the process of creating formal diagnostic guidelines for publication in a peer-reviewed journal
Science Advisory Board Policies
Yes, willing to share SAB policies
Research Network Policies
Has CRN but no policies
Research Roadmap
Yes we have a Research Roadmap, and will share policies
International Chapters
None
International Partners
Europe