Lymphedema Organizations Making a Difference

Lymphedema Organizations Making a Difference

The lymphedema community is more visible and raising more awareness than ever before. We owe a lot of that to the following organizations, putting in the work to educate and help with the quality of life of lymphedema patients everywhere.

Lymphatic Education & Research Network (LE&RN)

The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded in 1998 to fight lymphatic diseases and lymphedema through education, research, and advocacy. With chapters throughout the world, LE&RN seeks to accelerate the prevention, treatment, and cure of these diseases while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic diseases, which include lymphedema and lipedema. Find your LE&RN chapter here.

Lymphedema Blog

Published for over ten years, The Lymphedema Blog covers a multitude of topics related to lymphedema and is a great resource for lymphedema education for patients and therapists alike. The author of the blog Joachim Zuther is an accomplished lymphedema professional, the founder of the Academy of Lymphatic Studies, and the author of “Textbook for Comprehensive Lymphedema Management”.

Lymphedema Treatment Act (LTA)

The Lymphedema Advocacy Group is an all-volunteer organization of patients, caregivers, healthcare professionals, and industry partners. Their mission is to advance lymphedema care in the United States by advocating for improved insurance coverage for the diagnosis and treatment of the disease. For this purpose, we work to increase awareness of and education about lymphedema amongst lawmakers, insurance providers, and other relevant entities. We support attempts to improve coverage at both the state and federal levels and encourage all members of the lymphedema community to become active participants in this process. Our primary objective at this time is the passage of the Lymphedema Treatment Act (US).

The LIVE Today Foundation

The LIVE Today Foundation is a 501c3 nonprofit organization whose mission is to provide free compression garments to patients and survivors with lymphedema. Dr. Sheri launched the LIVE Today Foundation to respond with compassion to the survivor communities’ post-operative breast cancer treatment needs. 40% of the 3 million breast cancer survivors living in the US suffer with lymphedema, and that number is higher in minority and under-resourced communities where there is more need and less ability to pay for treatment. Responding to the global impact of lymphedema, the LIVE Today Foundation has expanded its reach to include not only survivors but also cancer patients in active treatment.

Step Up Speak Out

The goal of Step Up Speak Out is to provide accurate and accessible information about lymphedema, its prevention, and treatment, to all women and men who have been treated for breast cancer. They also aim to support those with breast cancer as they pursue prevention and treatment options for lymphedema and to help them find the resources they need for managing both the risk and the treatment of this condition.

Please note that the website has not been updated since 2016, some information might be outdated.

Brylan’s Feat Foundation

The Brylan’s Feat Foundation is determined to serve as a resource and advocate for children and their families who have been impacted by lymphedema. The mission of Brylan’s Feat Foundation is to assist in providing necessary treatment to pediatric lymphedema patients who are in financial need, help raise awareness, and promote the education of this disease.

Ninjas Fighting Lymphedema Foundation

The Ninjas Fighting Lymphedema Foundation helps patients, schools, hospitals, nonprofits, and communities to better respond to the lymphedema epidemic. They offer education, advocacy, and empowerment for individuals and organizations to take an active role in creating awareness and spreading hope. The daily mission of Ninjas Fighting Lymphedema Foundation is to bring hope and a voice to everyone fighting lymphedema.

National Lymphedema Network (NLN)

The National Lymphedema Network’s mission is to empower our community of lymphedema practitioners and patients by providing educational opportunities, networking opportunities, and interventional resources. The NLN aims to inspire clinicians to provide world-class care for people with lymphedema by promoting best practice guidelines and standards of care.

Lymphology Association of North America (LANA)

The objective of LANA is to promote standards for the certification of healthcare professionals who help individuals with lymphedema and/or related disorders manage their lymphedema and to promote lymphedema awareness and the science of lymphology.

The Lymphology Association of North America (LANA) is a non-profit corporation comprised of healthcare professionals experienced in the management of lymphedema. Having recognized the need for a national certification examination for lymphedema therapists, LANA tests knowledge considered fundamental in the management of lymphedema.

American Vein and Lymphatic Society (AVLS)

The American Vein & Lymphatic Society (formerly the American College of Phlebology) is the premier association for physicians and allied health professionals dedicated to the diagnosis and treatment of venous and lymphatic disease. The AVLS is the leading resource for venous and lymphatic care physicians, health professionals, and patients.

ORGANIZATIONS SERVING OUTSIDE THE UNITED STATES

International Lymphoedema Framework (ILF)

The International Lymphoedema Framework is dedicated to creating a better everyday life for people worldwide living with lymphoedema and related disorders. ILF uses its resources to raise awareness of lymphedema, help to drive the conversation of lymphedema in the healthcare setting, and in the ethical use of its resources and its capacity to actively contribute to the improvement of the management of lymphedema worldwide and especially in developing countries.

Lymphoedema Support Network (LSN)

The Lymphoedema Support Network is a registered charity and the UK’s national patient support organization for lymphoedema. LSN takes the lead role in educating and supporting patients with this condition by providing a high standard of information and promoting self-help. Since its inception in 1991, when there was very little information or help available for patients, the LSN has evolved into an independent and influential charity. It is the only national patient-led organization offering information and support to people with this condition and has a unique understanding of the patients’ experience.

British Lymphology Society (BLS)

The British Lymphology Society is a dynamic and innovative body providing a strong professional voice and support for those involved in the care and treatment of people with lymphoedema and related lymphatic disorders, including lipoedema. Through the support of its membership, the Society seeks to achieve high standards of care and equitable access to treatment across the UK, raise awareness of the condition, promote early detection and intervention with supported self-management.

Canadian Lymphedema Framework (CLF)

The Canadian Lymphedema Framework is an academic and patient stakeholder collaboration, which is part of an international initiative to promote research, best practices, and lymphedema clinical development worldwide. The mission of the CLF is to improve the management of lymphedema and related disorders in Canada.

The CLT publishes Pathways, Canada’s only lymphedema magazine, which addresses the need for lymphedema awareness and education among patients, those at risk, and health professionals.

Australasian Lymphology Association (ALA)

The goal of the Australasian Lymphology Association is to be the peak professional organization promoting best practices in lymphoedema management, research, and education in Australasia. 

[Photo by Tim Mossholder on Unsplash]