Join LGDA Patient Matching Program - Lymphangiomatosis & Gorham's Disease Alliance

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Join LGDA Patient Matching Program

Patient Matching Registration Form

Today's Date
Date Format: MM slash DD slash YYYY
PLEASE TELL US ABOUT THE PATIENT
Name*
First Last
Date of Birth*
MM
DD
YYYY
Gender*
- Male
- Female
Address*
Street Address Address Line 2 City State / Province / Region ZIP / Postal Code 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?
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

Raising Awareness

Reach for a Cure

Register a patient in the International LGDA Registry for Lymphatic Malformations. Help researchers worldwide unlock the mysteries of lymphangiomatosis and Gorham's disease to find a treatment and a cure!

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The Patient & Family Voice

Patient Support

LGDA is here to help you find resources and to provide support to patients and families living with Gorham-Stout disease (GSD) & lymphangiomatosis/generalized lymphatic anomaly (GLA).

Click Here to Email Us

LGD Alliance
19919 Villa Lante Place
Boca Raton, FL 33434
Phone: 1-318-734-8240

LGDA is Rare As One!

We’re part of the Chan Zuckerberg Initiative’s (CZI) Rare As One Project — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.

The Project aims to strengthen the efforts of the selected patient-led groups and will help these communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. To support the project, CZI will provide funding of $450,000 over two years for each of the 30 selected organizations and will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.

Through Rare As One, the LGDA will further develop a natural history of complex lymphatic anomalies through three networks: patient, clinical and scientific.

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