Register A Patient

About our Patient Information Form

The LGDA Patient Information Form was created in order to streamline our Awareness and Patient Support Programs. In order to raise awareness of these diseases and promote research the information we use must be as accurate as possible, so we created a standard form that asks the same questions about every patient. The information about patients who have died as a result of these conditions is also vital to the mission of raising awareness, so we encourage those of you who have lost loved ones to complete the registration for them. We also use this information to match patients (and families) who indicate on the form that they wish to be introduced to other patients.

A few things to know about the form and how we use your information:

• The same form is used for both our Awareness Program and our Patient Matching Program, which is part of our Patient Support Program.
• The form helps us count the number of patients with lymphangiomatosis and Gorham’s disease, which is used in e-newsletters, mailings, fundraising efforts, and other ways to raise awareness of these diseases and promote research.
• We evaluate the information in the forms to determine how many patients fit into a given category. For example, how many females under age 15 or how many patients have used interferon.
• We share only the numbers in the same ways we share the patient count in order to make people aware of the impact these diseases have on patients and their loved ones.

What we do not do with your information:

• We never share your personally identifying information (names, addresses, email, etc), with anyone outside the patient support team and board of directors without your consent.
• We do not sell or share our mailing lists.

Click Here To Complete the Patient Information Form

 If you prefer, you may fill out the form, print it out and mail it to:

LGD Alliance: Attention Patient Registration
19919 Villa Lante Place
Boca Raton, FL  33434