Register for 2018 Patient & Family Conference

The 2018 Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference will be held on July 27 & 28, 2018, at the Hilton DFW Lakes Executive Conference Center in Dallas suburb of Grapevine, Texas. Planning is well underway for this exciting conference that you won’t want to miss!

Those attending the conference will learn more about generalized lymphatic anomaly / lymphangiomatosis (GLA), Gorham-Stout disease (GSD), and Kaposiform lymphangiomatosis (KLA) from leading clinicians and researchers who will speak on topics including diagnostic approaches, challenges in clinical management, and ongoing and future research efforts. There also will be ample time for you to meet and visit with other patients and families living with GLA, GSD, and KLA.

There will be planned activities for children supervised by child care professionals during the meeting.

The event will wrap up with a banquet on Saturday evening during which there will be a special awards presentation.

We are very excited about the program we are planning and hope you and your family will join us for this informative event!       

Register Now

Conference Schedule:

Friday, July 27, 2018

Registration & Child Care Sign-in: 12:00 noon to 1:00 PM

Meeting Session 1 – Diagnosis and Intervention: 1:00 PM to 5:00 PM

Structure and Function of Lymphatic System – Miikka Vikkula (Université catholique de Louvain (UCL), Brussels, Belgium)
Differentiating GLA, KLA, and GSD – Ionela Iacobas (Texas Children’s Hospital)
Imaging in Diagnosis and Management – Matt Hawkins (Children’s Hospital of Atlanta)
Interventional radiology – Role of MR lymphangiogram – Max Itkin (University of Pennsylvania)
Surgical Intervention – Juan Carlos Lopez-Gutierrez (La Pa Children’s Hospital, Madrid, Spain)

Saturday, July 28, 2018

Breakfast and Child Care Sign-in: 7:30 AM to 8:00 AM

Meeting Session 2 – Medical Management and Complications: 8:00 AM to 12:00 noon

The Multidisciplinary Team – Mike Briones & Rachel Swerdlin (Children’s Hospital of Atlanta)
Use of Sirolimus in GLA/GSD/KLA – Cameron Trenor (Boston Children’s Hospital)
Use of Bisphosphonates in GLA/GSD/KLA – Yaser Diab (Children’s National Health System, Washington, DC)

Coagulopathies in GLA/KLA/GSD – Judy Margolin (Texas Children’s Hospital)

Pulmonary Complications – David Spielberg (Texas Children’s Hospital)

Lunch: 12:00 noon to 1:00 PM

Meeting Session 3: 1:00 PM to 5:00 PM

Discovering the Genetic Basis of Rare Disease – Michael Dellinger (UT Southwestern)
How Tissue Donation Advances Research – Thuy Phung (Baylor College of Medicine)
Directions in Research – Michael Dellinger  (UT Southwestern)

Banquet & Awards Presentation Saturday Evening, 7:00 PM

Conference Registration Fee:

Patients and children under age 16: FREE

16 years and older: $75.00 each

The registration fee helps to cover our costs for the conference meeting sessions, conference materials, breakfast and lunch on Saturday, and the Banquet Saturday evening. Register here to ensure your place is reserved.



Hilton DFW Lakes Executive Conference Center
1800 Highway 26E
Grapevine, Texas, 76051-9641, USA
TEL: +1-817-4818444
FAX: +1-817-4813160

Group rate: $99.00/night, plus tax. Included in this discount rate are in-room wi-fi and parking. (For those wishing to extend their stay, this group rate will be extended for 3 nights before and 3 nights after the meeting, if rooms are available.)

Online reservation link: DFW Lakes Reservations

You must make your reservations by July 3, 2018, to receive the group rate. (After this date, the LGDA room block will be released and rooms will be offered at the hotel’s regular rate based on availability.)

When calling to make reservations, please ask for the LGDA group conference block rate.

DFW International Airport is a full-service US port of entry, served by most major airlines.
The hotel offers free shuttle service to and from Dallas Fort-Worth International Airport (DFW). When you arrive and have claimed your luggage (if any checked), call 817-481-8444 and select ‘shuttle’ when prompted. You will be asked which terminal (DFW has 5 terminals, A thru E) and baggage claim area; the shuttle will pick you up in the designated area for the terminal and baggage area you provide. 
Child Care:

Onsite group child care will be provided Friday afternoon and all day Saturday, as well as during the banquet dinner Saturday evening. Children under age 12 will not be allowed to attend the meetings.

The child care provider is licensed, insured, and CPR certified. The staff has experience working with children with special needs, as well as siblings. The children will participate in planned activities that are engaging and appropriate for their ages. The theme for this year’s child care program is “Dallas Dance Party” and will have activities for all ages and abilities.

Friday Dinner:

This meal will be on your own. The hotel has two restaurants and a coffee bar on site, and offers shuttle service to Grapevine Mills where you will find a variety of fast food and casual dining, and other entertainment, including shopping, bowling, Sea Life Aquarium, and Legoland. There will be a meet-and-greet at the hotel in the evening for attendees and presenters to visit with one another.

The hotel’s website has more information about things to do in the DFW Metroplex. Also see the Google map of the area.

For more information about the conference send us an email:

We are looking forward to having you and your family join us for this important event.

Register Now