L-W-O Community

For families whose children live with Paediatric and Primary Lymphoedema

Proud to be invited

Late 2019 I was very proud to be invited to become a Patient Representative of the European Advocacy Group and then in 2020 before lock-down and Covid-19 curtailed everything we do I was thrilled to be asked to become a signatory of the Manifesto shown below and signed by patient organisations across Europe.

L-W-O Supports World Lymphoedema day on the 6th March and I sincerely hope this will get official recognition soon.  In the UK, the British Lymphology Society organises Lymphoedema Awareness Week which coincides with World Lymphoedema Day.


Working with others

Patient representative


Late 2019 I was invited to join The European Patient Advocacy Group (ePAG) as a Patient Representative an association I am immensely proud to be a small part of.  In 2020 it was the first time ever that, associations representing patients with lymphoedema in Europe, came together to write and co-sign a Manifesto to express their opinions and wishes for those living with lymphoedema. Despite all eyes on the pandemic, the initial efforts were rewarded as the manifesto was shared across the world by patients, clinicians, organisations, and the public. Furthermore, it was the first step to create a bond among us, to unite despite national borders, cultural and linguistic differences.

In 2021 more associations wanted to join this initiative and a total of 27 associations across 13 European countries co-signed and translated the manifesto into 11 languages. Our Manifesto is once again being shared and we encourage you help us to raise awareness, inform and shine a light on lymphoedema.

In the UK I am proud to say L-W-O Community is involved as is our friends at Lymphoedema Support Network.

In an ideal world if patients, patient advocates, patient associations and lymphoedema organisations could work together we would raise the profile of lymphoedema improve the quality of care for lymphoedema patients educate the public and clinicians the latter who have little knowledge of the lymphatic system.



Page First Created July 2020

Last Updated 23/03/2021