Register NOW for 1st LGDA Patient & Family Conference – June 2014

Dallas Skyline The very first Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference to be held on June 13-14, 2014, at the Sheraton Suites Market Center in Dallas, Texas. Planning is well underway for this exciting conference that you won’t want to miss! This will be a very exciting and informative event for our community.

Among the experts joining us for the weekend will be some names familiar to most in our worldwide community: Denise Adams, MD, from Cincinnati Children’s Hospital; Cameron Trenor, MD, and Steven Fishman, MD, from Boston Children’s Hospital; Lelend Fan, MD, from Colorado Children’s Hospital; Timothy Vece, MD, from Texas Children’s Hospital; Juan Carlos Lopez-Gutierrez, MD, from La Paz Hospital in Spain; and Michael Collins, MD, Chief of the Skeletal Clinical Studies Unit at NIDCR, National Institutes of Health.

Those attending the conference will learn more about lymphangiomatosis and Gorham’s disease from these and other specialists and hear first-hand from researchers in the field about what they are doing now, the plans for future research, and how you can help. There also will be ample time for you to meet and visit with other patients and families living with lymphangiomatosis and Gorham’s disease.

Presentations on topics important to patients of all ages and families are being planned. Also, there will be planned activities for children supervised by Child Care Professionals. The event will wrap up with a family banquet on Saturday evening during which the LGDA Founder’s Award will be presented.

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

We understand that many of our families have expenses that may make it difficult to attend and we have made every effort to keep costs as low as possible; additionally, a small scholarship fund has been provided by an anonymous donor to help defray a portion of the cost of attending for those in need. For more information or to request a scholarship application, send us an email:

Conference Schedule:

Friday, June 13, 2014

Registration & Child Care Sign-in:

12:00 noon to 1:00 PM

 Meeting Session 1:

1:00 PM to 5:00 PM

 Saturday, June 14, 2014

Breakfast and Child Care Sign-in:

7:30 AM to 8:00 AM

Meeting Session 2:

8:00 AM to 12:00 noon


12:00 noon to 1:00 PM (children will join us for lunch)

Meeting Session 3:

2:30 PM to 5:00 PM


Family Banquet & Presentation of LGDA Founder’s Award Saturday Evening, 7:00 PM

Conference Registration Fee: $50.00 per family

The registration fee includes access to all sessions, conference materials, breakfast and lunch on Saturday, child care on Friday and Saturday, and the Family Banquet Saturday evening. Register by March 15, 2014, to ensure your place is reserved.

Hotel: $119.00/night, plus tax (rate will be extended for those wishing to stay longer)

Each suite has either 1 king or 2 double beds in bedroom and a pull-out sofa in the living room. A limited number of cribs are available on first-come, first-served basis. Reservations must be made by May 14, 2014, to receive the discounted room rate. Included in this discount rate are in-room wi-fi and parking.

Location: 2101 North Stemmons Freeway; Dallas, TX, 75207, United States

Reservations: After you have completed and submitted your registration form and payment you will be automatically redirected to the hotel reservations site, or you may return here later and click on this link: Sheraton Reservations to reserve your room(s) through the hotel's reservation site to ensure you receive the group rate.

Child Care:

Due to a generous contribution, your $50 registration fee will also cover the cost of child care.

Onsite daytime group child care will be provided Friday afternoon and all day Saturday. Pre-registration will be required. The pre-registration packet will be provided in early May and must be returned by June 1, 2014. 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. On Saturday afternoon the children will have the opportunity to participate in one of two professionally supervised workshops, one for patients and one for siblings, to share experiences about how these diseases have affected them.

Friday Dinner:

This meal will be on your own; however, we have arranged for a discounted group rate for Medieval Times Dinner & Tournament, which happens to be located next door to the hotel, if there is enough interest. If you would like to take advantage of this group discount, the cost will be $43 per adult and $35.50 per child 12 and under, which includes tax and gratuity (lap children ages 3 and under are free). American cuisine is available on site in the Red Fire Grille Bar & Lounge on the ground floor of the hotel behind the lobby. There are other dining options within walking distance, from all-around family fare at Denny’s (a block away) to the upscale fine dining experience of SĒR Steak + Spirits on the 27th floor of the Hilton Anatole with its stunning views of the city (across the street).

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

IMPORTANT NOTICE: Interest in the Patient Family Conference has been extraordinary and there are no more reservations available at this time. We have begun a waiting list. To be added to the waiting list, click the button on the left below that says "Click Here to REGISTER NOW" and complete and submit the form. If more space becomes available, individuals who are on the waiting list will be notified in the order of submission and provided instructions on how to accept the available openings.

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