The body’s lymphatic system tends to attract little notice—until something goes wrong, as it has for hundreds of millions of people worldwide. When surgery, genetic disease, infection, injury, and certain types of cancer disrupt the lymphatic system, the result can be constant swelling, pain, and hardening of the skin. In the United States, 8 million of the 10 million people with the lymphatic disease lymphedema acquired it as a result of surgery to treat cancer.
For too long, care for lymphatic disease, like the lymphatic system itself, attracted relatively little notice. It was misdiagnosed and went untreated, consigning millions of people to lifelong suffering and disability from this progressively debilitating disease.
“I’ve lived with [lymphedema] for 32 years,” said Catherine Holley of Quincy, MA. “With every decision or choice I make in life, the very first thing I consider is the impact it will have on my leg.”
The Lymphatic Education & Research Network (LE&RN) was founded in 1998 to improve life for people affected by lymphatic disease. It aims to make sure patients, caregivers, and health care providers—as well as the policymakers who set research funding priorities—have the trusted information they need to achieve the best possible health outcomes.
Those living with the disease or, critically, facing a situation like cancer surgery that increases their risk of lymphedema need to know where they can turn. To help health care institutions marshal the resources necessary to guide patients through best-practice care and to provide patients with clear beacons of expertise, LE&RN established the Centers of Excellence in the Diagnosis and Treatment of Lymphatic Diseases, the world’s first network of its type, with support from the Stavros Niarchos Foundation (SNF).
“The World Health Organization estimates that up to 250 million people worldwide live with the debilitating disease called lymphedema,” said LE&RN President and CEO William Repicci. “There is no cure, but thanks to support from SNF starting in 2020, LE&RN has been able to establish over 50 Centers of Excellence in Lymphatic Medicine located in 20 countries. Each of these Centers now offer state-of-the-art treatments, and hope, while we seek a cure.”
The Centers of Excellence commit to meeting top standards of patient care, honing physicians’ awareness of lymphatic disease and ability to diagnose it, providing patients clear information about how to connect with services, furthering research on the disease, and following through on patient care with lymphatic disease therapists. An annual State-of-the-Art Summit organized by LE&RN brings together hundreds of clinicians and researchers from dozens of countries.
Three of the ten latest additions to the Centers of Excellence are institutions SNF has partnered with in the past: Columbia University Irving Medical Center/New York Presbyterian was designated as a LE&RN Comprehensive Center of Excellence. Aristotle University in Thessaloniki and University Hospital Zurich were designated as Network Centers of Excellence, meaning that they can provide lymphatic services through a network of nearby affiliates.
Addressing major systemic gaps in the health care system is a long-term focus for SNF, notably through our ongoing global Health Initiative, and LE&RN’s work to create the Centers of Excellence is helping meet a widespread but underappreciated need by bringing a largely forgotten disease to the forefront. Though a small organization, LE&RN has become an indispensable connecter, convener, and advocate that major health institutions rely on, achieving outsized impact in the effort to raise the overall standards of care for lymphatic disease globally.