This group of hardworking people many of whom are volunteers, work on the principal that we are Expert patients and therefore best placed to educate patients and families on the management of their diseases such as paediatric and primary lymphoedema (PPL). We can identify and recommend expert centres or other lymphatic healthcare professionals (HCPs) across the UK and the European Union.
The group successfully published in 2020 and 2021 manifestos with a call to action. The 2021 Manifesto co-signed by 27 Patient Associations and translated into eleven languages, for World Lymphoedema Day 2021. See the 2021 manifesto and read about the events here...
As patient associations went further by creating a brief survey, to collect information to understand the struggles European patients and carers experience to obtain an essential treatment modality, the compression garments...
1102 patients and carers responded and based on the written comments made by 59% of the respondents, three main common denominators in their struggles were found across Europe:
measurement and fitting
The prescription processes.
This amazing group aim to promote and encourage a patient-centred approach in clinical care, service improvement. strategic development, decision-making, ensure the need of rare disease patients are considered and included in discussions and activities, Contribute to the development and dissemination of information to patients, from policy to good practices, care pathways and guidelines.