Draft:Lymphatic Education & Research Network

• Comment: Most of the sources are primary sources published by the organisation. Aydoh8^[contribs] 14:39, 1 April 2025 (UTC)

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Lymphatic Education & Research Network

The Lymphatic Education & Research Network (LE&RN) is an international 501(c)(3) non-profit. organization founded in New York, United States in 1998. It is dedicated to fighting lymphatic diseases through education, research, and advocacy. LE&RN is committed to supporting patients impacted by lymphatic diseases and accelerating the prevention, treatments and cures for lymphedema, lipedema, lymphatic anomalies, and the continuum of lymphatic diseases. In 2014, Academy Award-winning actress Kathy Bates was designated the global spokesperson for LE&RN and appointed to the organization’s honorary board.

Lymphatic Education & Research Network (LE&RN)

Formation	July 23, 1998
Founder	Wendy Chaite, Esq; Stanley Rockson, MD
Founded at	New York, New York
Type	Nonprofit organization
Headquarters	New York, New York, United States
Services	Centers of Excellence; LE&RN Resource Center Chapters; Global Patient Registry; National Education Campaign; World Lymphedema Day; Lymphatic Forum; LE&RN Online Symposium Series
Fields	Health
President & CEO	William Repicci (2012 - present)
Website	https://lymphaticnetwork.org/
Formerly called	Lymphatic Research Foundation (1998 - 2012)

Programs

The LE&RN Global Registry for Lymphatic Diseases is a comprehensive patient-centered registry that aims to inspire groundbreaking research, accelerate the development of treatment options, and create a pathway toward curing lymphatic diseases.

The LE&RN Resource Center is a complimentary global support service designed to assist the lymphatic community in navigating the complexities of lymphatic diseases.

LE&RN sponsors the biennial Lymphatic Forum conference, which brings together over 200 researchers from around the globe, as well as the peer-reviewed quarterly journal Lymphatic Research and Biology, presenting the latest developments and advancements in lymphatic biology and pathology from the leading biomedical investigators worldwide.

LE&RN offers free education to the lymphatic community through the LE&RN Online Symposium Series, which features more than 116 hours of expert videos and counting. The non-profit fosters collaboration and knowledge exchange through various programs, including the LE&RN/Lymph Notes U.S. Lymphedema Therapist Scholarships and Early Investigator Travel and Poster Awards.

Centers of Excellence

LE&RN has 70 Centers of Excellence in the Diagnosis & Treatment of Lymphatic Diseases spanning 20 countries. LE&RN Centers of Excellence are a global network of multidisciplinary clinical care and service centers for individuals and families affected by lymphatic diseases. In addition to clinical and social services, the Centers offer education in the geographic areas they operate, are involved in lymphatic disease clinical research, and work with LE&RN locally and internationally to continually improve the lives of those affected by lymphatic disease and their families.

Centers of Excellence can be found at The Boston Lymphatic Center, a joint program between Beth Israel Deaconess Medical Center (BIDMC) and Boston Children's Hospital; the Center for Lymphatic and Venous Disorders, Stanford University School of Medicine; Cedars Sinai Health System; the University of Texas MD Anderson Cancer Center;

Comprehensive Center of Excellence

• Asan Medical Center (Seoul, South Korea)
• The Boston Lymphatic Center (a joint program between BIDMC & Boston Children’s Hospital, teaching affiliates of Harvard Medical School) (Boston, MA, USA)
• Cedars-Sinai Health System (Los Angeles, CA, USA)
• Center for Lymphatic and Venous Disorders, Stanford University School of Medicine (Palo Alto, CA, USA)
• Center of Prevention, Diagnosis and Treatment of Lymphedema - Lymphatic Diseases for Adults and Children Metropolitan Hospital (Athens, Greece)
• Centre Hospitalier Universitaire Vaudois CHUV - Dept. of Vascular Medicine, Lausanne University Hospital (Lausanne, Switzerland)
• The Jill and Mark Fishman Center for Lymphatic Disorders at Children’s Hospital of Philadelphia (CHOP) (Philadelphia, PA, USA)
• CHU Montpellier (Montpellier, France)
• Cleveland Clinic (Cleveland, OH, USA)
• Columbia University Irving Medical Center/New York Presbyterian (New York, NY, USA)
• Derby Lymphoedema Service - Royal Derby Hospital (Derby, United Kingdom)
• Johns Hopkins Hospital (Baltimore, MD, USA)
• Keck Medical Center of USC (Los Angeles, CA, USA)
• Nij Smellinghe Hospital Center of Expertise for Lymphovascular Medicine (Drachten, Netherlands)
• The Ohio State University Comprehensive Cancer Center (Columbus, OH, USA)
• Oregon Health & Science University Healthcare (Portland, OR, USA)
• Penn Center for Lymphatic Diseases and Lymphedema (Philadelphia, PA, USA)
• St George's, University of London (London, United Kingdom)
• The University of Chicago Medicine (Chicago, IL, USA)
• University of Michigan (Ann Arbor, MI, USA)
• Uppsala University Hospital (Uppsala, Sweden)

Comprehensive Cancer Center of Excellence

• Brigham and Women's Hospital (Boston, MA, USA)
• City of Hope (Duarte, CA, USA)
• Huntsman Cancer Institute at University of Utah (Salt Lake City, Utah, USA)
• Nebraska Medicine Buffett Cancer Center (Omaha, NE, USA)
• University of Kansas Medical Center (Kansas City, KS, USA)
• The University of Texas MD Anderson Cancer Center (Houston, TX, USA)

Comprehensive Pediatric Center of Excellence

• Children's Healthcare of Atlanta (Atlanta, GA, USA)
• Cincinnati Children's Hospital Medical Center Hemangioma and Vascular Malformation Center (Cincinnati, OH, USA)
• Nemours Children's Hospital Delaware (Wilmington, DE, USA)
• Texas Children’s Hospital Vascular Anomalies Center (Houston, TX, USA)

Comprehensive Network of Excellence

• The ALERT Program at Macquarie University (New South Wales, Australia)
• Aristotle University, Plastic Surgery Department (Thessaloniki, Greece)
• Centro Linfedema c/o C.C. La Madonnina (Milan, Italy)
• Greater Baltimore Medical Center (Baltimore, MD, USA)
• Lymphedema Program, McGill University Health Centre (Montreal, Quebec, Canada)
• Massachusetts General Hospital (Boston, MA, USA)
• Mayo Clinic Arizona (Phoenix, AZ, USA)
• Memorial Sloan Kettering Cancer Center (New York, NY, USA)
• University of Colorado Health (CO, USA)
• University Hospital Zürich and University Children's Hospital Zurich (Zürich, Switzerland)
• University of Washington, Division of Plastic Surgery (Seattle, WA, USA)
• Washington University (Saint Louis, MO, USA)

Referral Network of Excellence

• Lymphedema Center Santa Monica (Santa Monica, CA, USA)
• MedStar Health (Washington, DC)
• University of Miami Health Services (Miami, FL, USA)
• Vail Health/Shaw Cancer Center (Edwards, CO, USA)

Lymphatic Disease (LD) Surgery Center of Excellence

• The Center for Lymphatic Disease, University of California Davis (Sacramento, CA, USA)
• The Center for Lymphatic Restoration at Swedish Medical Center (Englewood, CO, USA)
• The Institute for Lymphatic Surgery and Innovation (Shrewsbury, NJ, USA)
• European Center of Lymphatic Surgery, Brussels (Brussels, Belgium)
• Fondazione Policlinico Universitario "Agostino Gemelli" IRCCS (Rome, Italy)
• The Genoa Center for Lymphatic Diseases (Genoa, Italy)
• Integrative Lymphedema Institute (Dallas, TX, USA)
• Kameda Medical Center (Chiba Prefecture, Japan)
• Kaohsiung Chang Gung Memorial Hospital (Kaohsiung, Taiwan)
• Maastricht University Medical Center (Maastricht, Netherlands)
• Pontifical Catholic University of Chile (Santiago, Chile)
• Santa Creu i Sant Pau - Clinica Planas (Barcelona, Spain)
• Sengkang General Hospital (Singapore)
• Seoul National University Bundang Hospital (Gyeonggi-do, South Korea)

Lymphatic Disease (LD) Surgery Network of Excellence

• Baptist MD Anderson Cancer Center (Jacksonville, FL, USA)

Lymphatic Disease (LD) Conservative Care Center of Excellence

• Hartford HealthCare Rehabilitation Network (Newington, CT, USA)
• Moffitt Cancer Center (Tampa, FL, USA)
• Montefiore Einstein Lymphedema Program, Montefiore Medical Center (Bronx, NY, USA)
• Mt. Wilga Private Hospital (Hornsby, New South Wales, Australia)
• Penrose Hospital Out-Patient Rehabilitation (Colorado Springs, CO, USA)
• Physio Lympha (St Petersburg, Russia)
• Sanwari Bai Surgical Center (New Delhi, India)
• Therapy Achievements (Huntsville, AL, USA)

World Lymphedema Day

In 2016, LE&RN created World Lymphedema Day on March 6th, which was established by unanimous vote of the United States Senate with sponsors Sen. Chuck Schumer (NY) and Sen. Chuck Grassley (IA).

Honorary Board

In 2014, Academy Award-winning actress Kathy Bates was designated the global spokesperson by LE&RN and appointed Chairperson of LE&RN’s honorary board. American actor Steve Guttenberg is a Celebrity Ambassador for LE&RN and a member of LE&RN’s honorary board. The honorary board includes: Dame Judi Dench, Jim Dale, Patricia Clarkson, Andy Cohen, Gemma Levine, Pat Crowley, Tone Bell, Sarah Hughes, Wendy Williams, and Dame Joanna Lumley.

National Lymphedema Awareness Campaign

Lymphedema impacts an estimated 10 million Americans and over 250 million people worldwide. Lipedema impacts up to 17 million women in the U.S., and 1 in 6,000 children are born with a lymphatic malformation. It is particularly prevalent among women with breast cancer. An estimated one in five women diagnosed and treated for breast cancer will experience chronic lymphedema, and there is a significant health disparity in lymphedema among Black and Hispanic women

In 2021, the Lymphatic Education & Research Network (LE&RN) received a three-year grant from the U.S. Centers for Disease Control and Prevention (CDC) to develop a National Lymphedema Awareness Campaign. The campaign aims to educate individuals who either have lymphedema or are at risk of developing the disease due to cancer.

LE&RN's President and CEO, William Repicci, serves as Project Director, and Dr. Stanley Rockson from Stanford University School of Medicine, who is also the Founding Chair of LE&RN’s Scientific and Medical Advisory Council, serves as the campaign’s Primary Investigator. Citizen Group, a San Francisco-based creative agency specializing in marketing and social impact initiatives, was chosen to lead the strategic outreach of the campaign. Additionally, actress and LE&RN spokesperson Kathy Bates, along with celebrity ambassador Steve Guttenberg, have joined the effort to increase public awareness.

As part of the campaign, in 2024 LE&RN produced the first-ever National Indicator Report on Cancer-Related Lymphedema, a comprehensive report assessing the current state of knowledge, care, and public health data concerning lymphedema in the United States. The report highlights the lack of sufficient public health information about lymphedema and its significant impact on patients, families, and society.

Experts involved with the report advocate increased research attention to the physical, mental, and economic consequences of lymphedema. The report emphasizes the need to better understand crucial factors, including epidemiology, access to appropriate care, health disparities, transitions in care, and the longstanding neglect of lymphatic system education in medical training.

National Commission on Lymphatic Diseases

In April 2019, Kathy Bates, serving as spokesperson for the Lymphatic Education & Research Network (LE&RN), testified before the U.S. Congress and led advocacy efforts during a Capitol Hill Lobby Day to secure increased federal funding for lymphatic disease research. Bates urged Congress to establish a National Commission on Lymphatic Diseases Research at the National Institutes of Health (NIH) and advocated for expanded lymphatic disease research and related initiatives at the NIH and the Centers for Disease Control and Prevention (CDC).

In response, Congress supported the creation of a National Commission on Lymphatic Diseases in 2022, aiming to improve scientific understanding of the lymphatic system and associated diseases. Subsequently, the NIH established a Working Group tasked with launching this commission. In 2023, the National Commission on Lymphatic Diseases officially commenced operations, co-chaired by Dr. Stanley Rockson, co-founder of LE&RN.

ARPA-H Lymphatic Disease Programs

Upon the establishment of ARPA-H, LE&RN collaborated with the lymphatic disease research community to prepare a disease-specific proposal for the consideration of the new agency. Following this effort, LE&RN's Special Projects Director Kimberley Steele left the organization and was designated a Program Manager at ARPA-H focused on lymphatic research.

In 2024, ARPA-H launched two programs focused on lymphatic disease. The Lymphatic Imaging, Genomics, and pHenotyping Technologies (LIGHT) program and the Genomic Lymphatic Intervention and Discovery Exploration (GLIDE) program. LIGHT is aimed at developing advanced technologies for diagnosing and treating lymphatic diseases, with an emphasis on biomarker discovery, innovative imaging methods, and genetic and epigenetic modeling to achieve timely and precise diagnoses that enhance patient outcomes. The GLIDE program focuses on creating new physical and pharmacological therapies targeting abnormal lymphatic structures and functions. Designed to complement the diagnostic advancements achieved by LIGHT, GLIDE promotes collaboration and integration between diagnostics and therapeutics, supporting the growth of an entirely new field of lymphatic medicine with accessible interventions for repairing lymphatic systems and treating chronic diseases.