Patient & Family Conference
With the registration at capacity, more than 110 patients and family members turned out for the very first Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference, held in Dallas, Texas, June 14-15, 2014. Attendees, including more than two dozen children, came from Europe, South America, and the United States and Canada. Five families attended who had lost a family member to lymphangiomatosis or Gorham’s disease.
Experts from 14 different areas, including medicine, surgery, research, genetics, nursing, nutrition, patient registry and tissue repository, presented at the conference and met and spoke with patients and families during the two-day inaugural event. Patients and families attending found it hard to express in words the full emotion of meeting a fellow patient for the very first time but were quite vocal regarding their gratitude for the opportunity to learn about the potentially life-threatening disease affecting them or their child and meeting and getting to know “the experts” and being able to ask questions. Presenters were unanimous in their regard for the commitment by the patient community and in the value of the experience for all those attending this extraordinary inaugural gathering.
Activities for the children attending the conference were provided by a Dallas area professional in event child care. In addition to the games and planned activities, the children and teens enjoyed meeting, mostly for the very first time, other kids with their rare disease. This was among the several poignant aspects of this inaugural conference.
Click on the links to read the Conference Report and abstracts of the speaker’s presentations (may take a few seconds to load, depending on your browser and internet speed):