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Our Goals & Priorities - LWA - Lipedema Word Alliance

Working Towards

Our Goals/Priorities:
POLICY

Contribute to the wider society/public dissemination of knowledge on Lipedema and new treatments for Lipedema.

Provide concrete proposals and inputs to political guidelines of health institutions such as WHO.

Provide an interface connecting clinicans and researchers in Lipedema

To produce high quality research, interdisciplinary collaborations and research networks are essential. Unfortunately, there have been too few of these research teams in recent years, with the result that many projects have been linked to the initiative of individual persons. LWA aims to act as an interface between different professions and disciplines to enhance such collaborative projects. In particular, the establishment of multicenter projects would be highly encouraged.

Identify and prioritize research topics

Scientific publications are considered valuable in the long term only if the results are reproducible. With the general increase in the interest of research on lipedema, the number of publications will steadily increase. With numerous new results, many new research priorities will be defined. In an international and interprofessional dialogue, LWA aims to act as an opinion leader, evaluating potential research priorities based on the reproducibility of the data.

Establishing a link between research groups and a worldwide network of eligible participants

In addition to the difficult conditions for interprofessional research groups, the ability to acquire a representative sample of lipedema patients is often limited. A homogeneous patient selection by disease stage or by ethnicity is often only possible through multicenter collaborations. Through its collaborative efforts with regional patient advocates, LWA aims to substantially simplify the patient acquisition process.

Promoting collaboration and dialogue between researchers

Research groups in the “Lipedema World” are linked mostly through personal contacts. An information exchange on methods or results thus primarily happens in a dialogue. However, the more research groups focus on lipedema, the more necessary it becomes to exchange information within the framework of organized events. Therefore, it is the declared goal of the LWA to provide a forum for this purpose and to organize regular meetings.

Working Towards

Our Goals/Priorities:
RESEARCH

Working Towards

Our Goals/Priorities:
DIAGNOSIS

Development of a consensus on internationally consistent diagnostic criteria

Stimulate discussion about new diagnostic approaches

Stimulate discussion about new therapeutic approaches