LYMPHO NEWS

Dear friends,

Our newsletter is one tool we use to keep readers up to date with the ILF’s activities and other news from the lymphoedema community. We want the world to know that lymphoedema is real and although primary lymphoedema is still a rare disease, secondary lymphoedema most certainly is not. Much education and research are needed from practitioners, industry, and academics to provide treatment and hopefully one day a cure for this debilitating condition. We hope you will join with us and promote the work of the organisations involved in this, whether they be patient-led or professional. We are in this together.

With best wishes from

Christine Moffatt and the ILF Board of Directors

ILF 2023 Conference in Nottingham, UK

The 11th ILF conference is to be held in East Midlands Conference Centre, Nottingham, UK from 13–15 June 2023. This event will bring together clinicians, researchers, industry providers, healthcare providers, advocacy groups and, most importantly, people living with lymphoedema and related disorders.

People with lymphoedema remain at the heart of what we do, so if you have lymphoedema, we would love to hear from you as planning goes ahead. What are the subjects you would like to know and hear about? What queries do you have? Please let us know by email: susie.murray@cricp.org.uk We are excited about this conference and need your help in making it what you want it to be.

Our international study to capture the size and impact of chronic oedema in different countries and health services across the world is now focusing on low resource countries. Uganda will be the first such country, with Christine Moffatt visiting in November ahead of the LIMPRINT project starting there. Two stakeholder meetings are scheduled — one with professionals and one with traditional healers. We will keep you updated in future newsletters about this exciting development. 

Children and young people with lymphoedema: quality of life project

Work is now underway to analyse the results from our questionnaire into how lymphoedema can affect children and young people (CYP), which is also being translated and validated into nine languages. The questionnaire (now closed) has been active on SurveyMonkey since November 2019, with over 480 children from 30 countries completing the questionnaire (599 questionnaires were attempted and 483 completed in full.) We hope to share the findings about what CYP think about their quality of life living with this rare condition at the ILF Conference in Nottingham in June 2023.

If you are a parent of a child who took part, or a young person who completed the questionnaire, we would like to thank you, as without your input and help it would not have been possible.

Industry support

The work of the ILF would not be possible without industry support. We thank the ILF Industry Partners for their continued engagement and support.

Learn more

Sign up to become an ILF Affiliate — it’s completely free and will ensure you stay informed about the goals and activities of the ILF and the work of our national frameworks around the world. ILF Affiliates benefit from:

· Reduced fees at future conferences
· Regular updates on activities and resources
· Opportunities to network with national lymphoedema frameworks
· Opportunities to influence future activities and direction.

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