The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham’s disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. The Lymphangiomatosis & Gorham’s Disease (LGD) Alliance is a non-profit foundation dedicated to patient support, advocacy, and the finding of effective treatments and cures for those affected by the rare lymphatic malformations known as lymphangiomatosis and Gorham’s disease.
1.) What does it mean to you personally to be a patient organization serving the rare community?
My daughter, Jana K. Sheets died in 2010 of a rare disease – lymphangiomatosis at the age of 35. From her lifetime experience of the fear and darkness with an orphan disease, she founded the Lymphangiomatosis & Gorham’s Disease Alliance – knowing well it would not benefit her. When she received a terminal prognosis from her pulmonologist, she asked me if I would continue her work for the benefit of others who be affected by this very difficult disease family.
2.) What do you find your patient community values most from your organization?
Our patient community tells us how much they find helpful all the information we provide about the disease, being able to go to our website and find clinical detail or links to science and research, our Patient Registry, being able to speak with other patients-families through our ‘Matching’ program, locating medical literature for their doctor, finding experts around the world, and being part of a worldwide community instead of feeling alone.
3.) What are some of the challenges your organization has faced?
There is a very small cadre of experts in our disease spectrum – lymphatic anomalies. The field of lymphatics is fairly new – a study a few years ago found that the field of lymphatics is barely taught in a 4-year medical school curriculum; finding scientists in lymphatic biology to determine the cause; the fact that our disease spectrum is not known to be inherited – such like looking for a needle in a haystack; finding support from the NIH – where lymphatics has not found an ‘institutional’ home; raising funds for an orphan disease, finding adult care (as nearly all of the experts are in pediatrics).
4.) Whats been your most successful awareness campaign and/or fundraising event?
No single event. We are members of NORD, the American Thoracic Society’s Public Advisory Roundtable [PAR], the education committee of the American Society of Pediatric Hematology-Oncology, and attend many medical/scientific society, and funding-source conferences (American Society of Bone and Mineral Research, PCORI, NHLBI Partner Conference, World Orphan Drug Congress, NORD Regional & Annual Conference, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, Controversies in Vascular Anomalies Conference, Genetic Alliance Conference, Sanford Burnham Medical Institute Symposium on Rare Diseases, and many more . . .
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