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PLEASE TELL US ABOUT THE PATIENT
Name
*
First
Last
Date of Birth
*
Month
Day
Year
Gender
*
Male
Female
Address
*
Street Address
Address Line 2
City
State / Province / Region
ZIP / Postal Code
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Virgin Islands, U.S.
Wallis and Futuna
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Yemen
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Country
Phone
Email
*
What is the patient's diagnosis?
*
Generalized lymphatic anomaly (GLA) / lymphangiomatosis
Gorham-Stout Disease (GSD)
Kaposiform lymphangiomatosis (KLA)
Central conducting lymphatic anomaly (CCLA)
Other or not sure
What areas of the patient's body are effected? Check all that apply:
*
Chest
Abdomen
Bones
Skin
What symptoms have been experienced? Check all that apply.
*
Pain
Fluid Collection(s)
Fracture
Cough/wheezing/difficulty breathing
Severe fatigue (patient unable to attend school/work/activities at least once a week)
slow growth/malnourishment
Fever not associated with acute illness
Frequent infection
Nausea/Vomiting
Diarrhea
Rash
None of the above
What is the name of the patient's main doctor for lymphangiomatosis/Gorham's disease?
What is this doctor's area of specialty?
Pediatrician
Family Medicine
Internal Medicine
Cardiology/Pediatric Cardiology
Pulmonology/Pediatric Pulmonology
Gastroenterology/Pediatric GI
Orthopedics/Pediatric Ortho
Hematology-Oncology/Pedicatric Hem-Onc
Dermatology/Pediatric Derm
Neurology/Pediatric Neuro
Surgeon/Pediatric Surgeon
Other
Don't Know/Not Sure
please select from the drop-down menu
Please enter the name of the clinic/hospital where the patient receives most of his/her care for lymphangiomatosis/Gorham's
*
Please include the city and state where this facility is located.
ABOUT THE PERSON COMPLETING THE FORM
Name of person completing form
*
First
Last
I am the:
*
Patient
Parent or Legal Guardian with whom the patient resides
Parent or Guardian with whom the patient does NOT reside
Spouse of the patient
other
Δ
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