The National Lymphedema Network: Advocating for the Lymphedema Community for 28 Years!

On March 6th, we recognize Lymphedema Awareness Day. What a perfect opportunity to highlight the National Lymphedema Network. This internationally recognized non-profit has been advocating for the lymphedema community for 28 years. We first met Saskia Thiadens, the organization’s founder, many years ago at an ASCO meeting. Her passion for providing education and guidance when there was none to be found was inspiring to us. The NLN remains THE resource for lymphedema information and support all these years later. We asked Patricia Egan, Interim Director and CEO of the NLN, to share what 2016 will bring for the organization.

Happy New Year from the National Lymphedema Network! We are ready for an exciting year both at the NLN and in the world of Lymphology!

We start off 2016 by honoring lymphedema patients and community members as a part of the 22nd Annual Lymphedema Awareness Day™ on March 6. March is Lymphedema Awareness Month™, and this is our opportunity to recognize the patients, caregivers, and advocates who are putting their passion and dedication into improving lymphedema care. Honorees this year include inspirational patients and caregivers, as well the Congressional leaders who are sponsoring and cosponsoring the Lymphedema Treatment Act.

Lymphedema is a swelling condition marked by an accumulation of lymph fluid in parts of the body where lymph nodes or lymphatic vessels are damaged or inadequate. This chronic but treatable condition affects millions of Americans. Among the many causes, damage from cancer treatment is the most common.

The NLN is proud to be a part of advocacy efforts to carry this important piece of legislation to passage. Recognizing lymphedema patients is key in creating change in the insurance and medical communities to better deliver coverage to patients with this under-diagnosed condition. The Lymphedema Treatment Act will establish a benefit category in the Medicare statute to provide coverage for the compression supplies essential to the treatment of lymphedema. We encourage all members of the lymphedema community to get involved by writing to their Senators and Representative to help in the nationwide efforts to raise support and sponsorship of this bill. Many opportunities to get involved are available on our website.

This year, we also prepare for the NLN 2016 International Conference in Dallas, TX on August 31 – September 1. As we finalize our exciting program of new research and best practices, we are also excited to include lymphedema patients in this year’s Lymph Science Advocacy Program (LSAP), which is now accepting applications! The LSAP program invites patients across the country to participate in this year’s conference where they will network with the nationwide lymphedema community, train to become successful patient advocates, and participate in a patient-centered series of educational programs. Patients can apply for the 2016 program on the NLN web site.

We expect 2016 will be an exciting year in the world of lymphology, and we are happy to continue our 28th year of service to our patient and medical community by providing up-to-date information, a network of care professionals and support groups, our quarterly journal for lymphedema patients and professionals, a free compression garment program for low-income lymphedema patients, our international conference, and other exciting opportunities and resources. Anyone in need of these or any other lymphedema patient or professional resources can contact the NLN toll-free at 800-541-3259 or [email protected]. We look forward to the progress that we can all make together!

About the Authoregan

Patricia J. Egan, MS, MBA is the Interim Executive Director and CEO for the National Lymphedema Network Inc. As is a third-generation lymphedema patient, she greatly appreciates all that the National Lymphedema Network does to disseminate information about lymphedema to health professionals, patients, and their families.

4 thoughts on “The National Lymphedema Network: Advocating for the Lymphedema Community for 28 Years!

  1. It would be helpful to the patients with lymphedema whom I know to have a boilerplate letter to Congressmen available to them. Please publish such a letter in which they can insert personal details and I’m sure that more letters will be sent.

    1. Hi Karen, please reach out to your provider and social worker. They should be able to guide you in the right direction to get help.

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