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.
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.
The group successfully published in 2020/21/22/23 manifestos with a call to action. The 2023 Manifesto co-signed by 24 Patient Associations and translated into twelve languages, for World Lymphoedema Day 2023.
The 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.
Many individuals with lipoedema and lymphoedema in Europe and the UK, struggle to find the right compression clothing. This was the finding of the above survey performed as part of the collaborative "put compression #underpressure" World Lymphedema Day (WLD) campaign on March 6.
This website is a result-based project.
Eurordis Open Academy
The goal of the Eurordis Open Academy is to offer education that empowers not only its volunteer organisations and member organisations, but also anybody else interested in learning more about rare diseases. We prioritise primary and secondary lymphoedema in the L-W-O community.
The Open Academy's training programmes are designed to strengthen patient advocates and give them the knowledge and self-assurance they need to contribute their expertise to discussions with policymakers, business leaders, and scientists about healthcare, research, and the development of new medications.
I've done four social and digital media courses with the Eurordis Digital School so far, earning the following certificates:
The Power of Community
Reaching the Right people: Celebrities and Influencers
Establishing an International Cooperation
Plan and Create for Social Media Success