Complex Lymphatic Anomalies 101 Series

As a prelude to the LGDA/LMI International Conference on Complex Lymphatic Anomalies, the LGDA hosted a series of 5 educational webinars for our patient, family, and primary care community. Watch here on our website or on our YouTube channel.

Science Saturday: Succesful treatment of GLA with the PI3K Inhibitor Alpelisib

Episode 3: Successful Treatment of Generalized Lymphatic Anomaly with the PI3K Inhibitor Alpelisib

Sponsored by the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) in collaboration with the Lymphatic Malformation Institute (LMI), the goal of Science Saturday is to highlight the impact of research on the care of patients. This forum brings together patients, their families, and scientists highlighting how research impacts the patient journey and how patient experiences help to shape research.

In this episode Taylor, a young woman with generalized lymphatic anomaly (GLA), shares her diagnostic odyssey and how her journey was impacted by exciting research performed by Dr. Adrienne M. Hammill, MD, PhD, Associate Professor of Pediatrics, and her colleagues at Children’s Hospital of Cincinnati and University of Cincinnati College of Medicine. In the second half of the episode, Kimberley Steele, MD, PhD, Director of Patient-led Research for the LGDA, joins the discussion to explore the importance of addressing mental health and parents and doctors including older children and teens in decision-making.

LGDA to Participate in Trans-NIH Lymphatic Coordinating Committee (TNLCC)

Photo of Dr. Michael KellyThe Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has been invited as the newest guest organization of the Trans-NIH Lymphatic Coordinating Committee (TNLCC).  Dr. Michael Kelly, the Chief Medical Officer will represent the LGDA and our patient community in meetings with this important research committee.

In 2002, the Trans-NIH Lymphatic Coordinating Committee was formed to enable program staff across NIH to work collaboratively to address the many diseases and conditions that involve the lymphatic system.  The National Heart, Lung, and Blood Institute (NHLBI) currently chairs the TNLCC, which has representatives from eight NIH Institutes, and engages closely with the external partners, including the LGDA. The NIH has formed and maintains strong working relationships with many of the key organizations to address lymphatic disorders.  These external organizations, including LGDA, attend the open portion of quarterly TNLCC meetings as guests, in compliance with Federal Advisory Committee Act (FACA) rules. The TNLCC facilitates trans-NIH collaborations, promotes synergy between research programs, fosters partnerships with external stakeholders, provides NIH support and representation for scientific conferences, and provides a network for mentoring trainees.

Physician Guide for GLA, GSD, KLA and CCLA

In June 2016 the LGDA and its partners, Lymphatic Malformation Institute and Alfie Milne Lymphangiomatosis Trust, brought together 52 physicians from 16 specialties to develop a consensus-based guidelines for comprehensive evaluation of the complex lymphatic anomalies (CLA) generalized lymphatic anomaly (GLA) previously called lymphangiomatosis, Gorham-Stout disease (GSD), kaposiform lymphangiomatosis (KLA), and central conducting lymphatic anomaly (CCLA). The results of that effort have now been published in the journal Pediatric Blood & Cancer.

Read the abstract here: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28036