2016 ASPHO-VA-SIG Fall Meeting

The American Society of Pediatric Hematology-Oncology Vascular Anomalies Special Interest Group (ASPHO-VA-SIG) is composed of physicians and other health care professionals in North America who have interest in vascular anomalies, the large umbrella under which generalized lymphatic anomaly (GLA – previously known as lymphangiomatosis), kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) are classified.

Representatives of advocacy groups such as the LGDA are invited to attend the group’s fall meeting each year, providing us the opportunity to meet with VA-SIG members, raise awareness of our diseases, and advocate for the needs of the patient community.  LGDA President Jack Kelly and Director of Patient Programs Lisa Klepper, RN, represented the LGDA at this year’s meeting held October 29, 2016, and hosted by Leonardo Brandão, MD, of the Hospital for Sick Children in Toronto, Canada.

The 31 ASPHO-VA-SIG members in attendance represented institutions from all over North America, many of whom provide care for children in our patient community.  While the focus of the meeting was not on GLA (lymphangiomatosis), KLA, or GSD specifically, one of the challenging cases presented was that of a patient with GSD and a Chiari malformation. This led to a broader discussion amongst the attendees about these diseases and their complications that stretched for nearly a half hour, providing us an opportunity to witness the interest in our diseases and the dedication of these doctors to helping the patients living with them.