Today marks World Lymphoedema Day, a global occasion dedicated to raising awareness of lymphoedema and related lymphatic diseases.
Established in 2016 through patient advocacy and officially recognised by the United States Senate, this year’s World Lymphoedema Day celebrates 10 years of progress. It’s a day for patients, healthcare professionals, policymakers, and the public to come together, educate themselves and others, and renew the commitment to improving life for those affected by lymphoedema.
Understanding Lymphoedema: A Chronic Condition with Widespread Impact
Lymphoedema is a chronic condition where lymphatic fluid builds up in body tissues, causing persistent swelling. It most commonly affects an arm or a leg but can also involve the torso, neck, or other areas. The swelling occurs because the lymphatic system – a part of our immune and circulatory systems – isn’t draining fluid properly. Over time, lymphoedema can cause a feeling of heaviness or tightness, reduced mobility, recurring infections, and hardening or thickening of the skin.
There are two main forms of lymphoedema:
- Primary lymphoedema: Caused by inherent malformations or genetic defects in the lymphatic system, it is relatively rare and can be present at birth or develop later in life.
- Secondary lymphoedema: More common and occurs due to damage or obstruction in the lymphatic system, often resulting from cancer treatments, trauma, or infections.
Beyond the visible swelling, lymphoedema significantly impacts quality of life. Patients often manage it with lifelong treatments such as compression garments, specialised massage, exercise, and vigilant skincare to prevent infection. Without proper care, lymphoedema can lead to severe complications, including disability and recurrent infections.
The Significance of World Lymphoedema Day
World Lymphoedema Day (WLD) on 6 March is an opportunity to change the narrative for this under-recognised condition. It began as an advocate-driven initiative and was officially established in 2016, thanks to efforts by the Lymphatic Education & Research Network and supporting patient communities. Now observed internationally, WLD aims to make lymphatic diseases a global health priority. By educating the public and medical community, the day has already influenced positive changes, including increased research collaborations and policy proposals.
Every year on this day, patients and supporters organise events – from educational webinars and community walks to social media campaigns. These efforts have helped break the silence around lymphoedema, fostering open dialogue and reducing stigma. The increasing coverage of lymphoedema in mainstream media and among healthcare leaders during March, recognised as Lymphoedema Awareness Month, shows the growing impact of this movement.
VASCERN’s Initiatives in Lymphoedema Care
VASCERN brings together leading experts and centres across Europe to improve care for rare vascular diseases, including primary and paediatric lymphoedema. Within VASCERN, the Paediatric and Primary Lymphoedema Working Group (PPL-WG) is specifically dedicated to lymphoedema. This network of specialists – dermatologists, vascular surgeons, geneticists, physiotherapists, and more – collaborates to advance diagnosis, treatment, and research for paediatric and primary lymphoedema patients. What makes the PPL-WG especially powerful is the partnership with patient advocates: the European Patient Advocacy Group (ePAG) for PPL includes representatives from several countries who work alongside clinicians to ensure that patients’ voices directly inform VASCERN’s priorities.
Key Resources for Lymphoedema Patients and Healthcare Providers
VASCERN has developed several resources to support both patients and healthcare providers in managing lymphoedema effectively:
Do’s and Don’ts Factsheets: These factsheets offer expert recommendations for both healthcare professionals and patients on managing lymphoedema, including skincare, compression therapy, and activities to avoid. They are designed to be easy to understand and follow. They are available in different EU languages.
→ Download the Do’s and Don’ts Factsheets
Patient Pathways: These structured documents serve as roadmaps for the optimal care journey of a lymphoedema patient, covering everything from initial diagnosis to follow-up care. The pathways help ensure that patients receive consistent and high-quality care across Europe.
→ Download the Lymphoedema Patient Pathway
Webinars: VASCERN regularly organises webinars featuring experts who discuss various aspects of lymphoedema management, from the latest treatment options to practical self-care tips. These webinars serve as an excellent opportunity for patients, families, and healthcare professionals to ask questions and gain deeper insights.
→ Watch Past Webinars
Pills of Knowledge: A series of short, informative videos that cover various aspects of lymphoedema management, from compression techniques to exercise recommendations. These are perfect for both patients seeking practical advice and healthcare professionals looking to update their knowledge.
→ Watch Pills of Knowledge Videos
How to get involved
World Lymphoedema Day is a call to action. Here are some ways to support the cause:
- Educate yourself and others: Sharing facts and resources from VASCERN’s website can help dispel myths and raise awareness.
- Join events and campaigns: Look for webinars or community events hosted by patient organisations or consider organising one. You can find events here.
- Support patient organisations: Connecting with national or international lymphoedema advocacy groups can strengthen the overall advocacy effort.
By participating in these actions, you can help build a more informed and supportive community for those living with lymphoedema.
Today, on World Lymphoedema Day 2025, let’s celebrate the progress made and recognise the work still ahead. With awareness, early intervention, and collaborative efforts, those affected by lymphoedema can lead better lives.
By uniting across sectors and borders, we can ensure that lymphoedema care keeps moving in the right direction towards a future where no patient is left behind and where this “silent” condition receives the attention it deserves every day of the year.