Lisa K. Klepper, BSN, RN

Lisa Klepper earned her Bachelor of Science in Nursing in 1995, graduating with honors from Northwestern State University College of Nursing. She has been involved with the LGDA since 2007 when she was introduced to its founder, Jana Sheets, by her daughter’s pulmonologist.

In 2010 Lisa joined the LGDA Board of Directors, serving for 5 years. In 2014 she served as co-chair of the planning committee for the Inaugural International LGDA Patient and Family Conference; she chaired the planning committee for the 2018 Patient-Family Conference, and led the planning committee for the 2nd International Conference on GLA & GSD in 2016. She currently serves the foundation as Director of Patient Programs and Patient Registry Director.

As Director of Patient Programs, Lisa is often the first point of contact for patients with a complex lymphatic anomaly (CLA) and their families. She is a registered nurse with extensive clinical experience in critical care nursing, hospice and palliative care, and infectious disease, as well as nursing administration; in 2009 her daughter Brittany, the youngest of her 4 children, passed away due to complications of what was then called diffuse pulmonary lymphangiomatosis. Drawing from her professional and personal experiences, Lisa assists patients and their families in finding specialty care, connects them to the LGDA support network, and leads the development of LGDA programs which provide education for patients, families, clinicians, and researchers and address health care policy issues that pertain to those living with CLA.

Lisa also is the Director of the International LGDA Patient Registry for Complex Lymphatic Anomalies. Launched in 2013 and funded by the LGDA, the LGDA Registry uses de-identified data to connect the CLA patient and research communities, support study recruitment, and to quantify the patient experience. The LGDA Registry has compiled more CLA patient-reported data than any other CLA research effort in the world.

In addition to her work for the LGDA, Lisa is a consultant for other rare disease foundations to advise and assist them to develop and manage their own patient registries. She also has experience developing and managing patient registries for pharmaceutical companies and the NIH. She and her husband are empty-nesters living in Shreveport, Louisiana.