LE&RN International Lymphatic Disease Patient Registry and Tissue Bank

Lymphatic diseases take a variety of forms, but, in general, they have the capacity to affect virtually every organ in the body. These lymphatic diseases include, but are not limited to, primary and secondary lymphedemas, lymphangiomas, cystic hygromas, lymphangiectasias, lymphangiomatosis, and syndromes of mixed lymphatic and vascular anomalies, along with a variety of other developmental disorders that influence lymphatic competence. The International Lymphatic Disease Patient Registry and Tissue Bank will include a representative and well characterized population of patients, with associated biological materials (blood and tissue samples), to serve as a source for the clinical and laboratory study of lymphatic diseases. This registry is a confidential database that contains information about individuals who carry the diagnosis of a lymphatic disease or of lymphedema. This comprehensive registry will serve as a repository of information that will enhance the future ability of health care professionals to accurately identify, categorize, treat and prevent these diseases. The tissue bank will facilitate the availability of blood samples to lymphatic investigators for prospective research including genetic and proteomic studies. We invite you to participate in this highly significant development for the patient community. An international patient registry paves the way for future clinical trials of experimental drugs and therapies designed to treat lymphatic diseases. We encourage all patients to participate in this important initiative. https://lernregistry.stanford.edu

The Seventh Annual New York Walk

Hundreds of supporters joined LE&RN in the fight against lymphedema and lymphatic diseases at the 7th Annual New York Walk to Fight Lymphedema & Lymphatic Diseases, as we crossed the historic Brooklyn Bridge. This event was generously sponsored by BSN medical (Premier Presenting Sponsor), Tactile Medical (Presenting Sponsor), BioCompression Systems, ImpediMed/L-Dex, Juzo, Eiger BioPharmaceuticals, Mikimoto, Medi, Cerini and Associates, Mount Sinai, LympheDivas, Lympha Press, Luna Medical, ShechterCare, Tarter Krinsky & Drogin, MME Ink, and Kashi. Actor Steve Guttenberg encouraged all walkers with his introductory remarks. New York State Senator Martin Golden and Assemblymember Linda Rosenthal were on hand to cheer our walkers on and to honor our 2016 New York Youth Ambassador, Nicholas Hernandez and our prior awardees Emma Detlefsen, and Connor Looby.

Kudos to Felicitie Daftuar, Founder and Executive Director of the Lipedema Foundation (https://www.lipedema.org/), this year's recipient of the LE&RN Research Advocate Award and Cerini and Associates for the LE&RN Business Leadership Award and BSN Medical who received our Impact Award.

The Second Annual CA Run/Walk to Fight Lymphedema & Lymphatic Diseases was held on Sunday, June 26, 2016 at Oceanfront Walk in Santa Monica. The top 10 fundraisers and guests were invited to attend a cocktail reception hosted by Academy Award-winning actress and LE&RN National Spokesperson Kathy Bates. LE&RN is again grateful for our national sponsors.

Additional LE&RN regional walks this year included the 2016 Texas Walk to Fight Lymphedema and Lymphatic Diseases, October 15, 2016 in Plano, Texas and the first Run/Walk sponsored by our Wisconsin Chapter, October, 8, 2016. To consider organizing a walk, please contact LE&RN at Lern@lymphaticnetwork.org or 516-625-9675

LE&RN Symposium Series

The LE&RN Symposium series continues to bring up to date research to you. Please look at our most recent symposia including, Lymph Formation, Circulation and the Immunological Role presented by Laura Santambrogio, M.D., Ph.D. of Albert Einstein College of Medicine. This event and our other presentations can be viewed at http://lymphaticnetwork.org/symposium-series

Lymphatic Forum 2017, June 8–10, 2017, Chicago, Illinois

LE&RN is proud to co-host and sponsor Lymphatic Forum 2017 in Chicago, June 8–10, 2017. Over 30 internationally renowned scientists will come together to discuss research in basic and disease-oriented areas of lymphatic and vascular biology including therapeutic approaches. For a complete program and details: www.navbo.org/events/Lymphatics2017

Highlights of this meeting include:

• Over 30 internationally renowned scientists working in basic and disease-oriented areas of lymphatic and vascular biology