Our Vision for Patient Engagement

The Lipedema World Congress aims to build meaningful collaborations within the industry, advocacy groups, clinicians, researchers, as well as patients and their caregivers. Patient-centricity is a vital aspect in the research and development of disease management, designing treatments, clinical trials, or other health solutions. Establishing a patient-centric solution involves getting feedback from real patients and their representatives, and making decisions based on their medical conditions, experiences, needs, perspectives, and priorities.
The Lipedema World Congress seeks to create an environment where patients’ expertise and knowledge are valued and harnessed for better research and ultimately better health outcomes for patients worldwide.

Patients Representatives

The candidate for eligible patients representatives:

  • Must represent a non-profit status organization, charitable, OR a non-governmental organization with a mission to:
    • Combat the disease „lipedema“
    • Improve and protect the health of lipedema patients
  • Should engage in programs, such as, research, education, advocacy, and service to lipedema patients
  • Be proficient in providing lipedema patient perspectives relevant to health policy, health technology assessment, and/or research and development (ie clinical trials, therapy development, etc.)
  • Must NOT be employed by health technology producers (biopharmaceutical, medical device, or diagnostic companies).

What is the registration fee?

We are pleased to offer a contingent of complimentary registrations for Patient Representatives and caregiver advocates. Tickets will be valid for the Pre-Congress on October 4 and the Lipedema World Congress from October 5 – 7, 2023.
In return, we kindly ask you to promote our meeting to the physicians in your database or your social media platform. Promotional materials (flyers, banners, social media posts) will be provided.
If you are interested in receiving a complimentary registration pass, please click here to complete the online form.

Pre-Congress Patients Representatives Day (October 4th, 2023)

The Patients Representatives Day is open to all patient advocates as well as caregivers, practitioners, researchers, policymakers, and representatives from healthcare and patient advocacy organizations. It is intended to serve as an interactive conference dedicated to advancing healthcare initiatives that are informed by the whole patient experience.
Lectures during the Patients Representatives Day will focus on sharing experiences from different countries and health care systems. In addition, “Patients Representatives Roundtables” with medical professionals and senior researchers are planned. The goal of the „Patients Representatives Roundtable“ is to provide a platform for patient representatives to interact with other stakeholders and determine how best to engage patient representatives in the research and decision making processes.

Patient Advocates Track Sessions (October 5th – 7th, 2023)

Selected Patient Advocates Track Sessions represent an opportunity for all Congress delegates to learn, share and explore areas of collaboration while discussing topical issues for patients and survivors that directly impact lipedema care and medical research.
The Congress team invites patient representatives to submit abstracts for lectures and poster presentation at the Lipedema World Congress 2023. Abstracts should highlight studies led by patient representatives or co-led by patients representatives with researchers. Authors must submit abstracts using the Abstract Submission System (https://www.lipedema-world-congress.com/call-for-abstracts). The deadline to submit an abstract is Sunday, April 16, 2023, 11:59 pm CEST.

More details will be announced in due course. For additional information on patient initiatives, please contact us.

If you have any question,
feel free to contact us

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