Lipedema World Congress 2027 Logo

PATIENT

REPRESENTATIVES

France Patient Reps Rome LWC

Patient Representative Organisations

Patient Representative Organisations (PROs) are essential partners in the Lipedema World Congress. They bring the lived experience of people with lipoedema into a primarily scientific and clinical environment, ensuring that research, policy, and practice remain grounded in what matters most to patients. Their involvement strengthens advocacy, informs priorities for research and service development, and helps translate congress outcomes into real‑world improvements in care and support.

The role of PROs at the Congress

PROs contribute to the congress in several key ways:

  • Program input: Submitting abstracts and contributing to sessions that highlight patient‑led research, advocacy initiatives, and support programs.
  • Voice of the patient: Providing patient perspectives in panels, roundtables, and discussions alongside clinicians and researchers.
  • Collaboration: Sharing experiences across countries and health systems to identify common challenges, successful models, and opportunities for joint action.
  • Implementation: Helping to take congress messages back to communities, influencing national agendas on recognition, diagnosis, treatment, and support.
LF Patient Reps Rome LWC
Lipoedema UK LWC Rome

Dedicated PRO track and collaboration sessions

A dedicated Patient Representative Organisations track will run on the Pre‑Congress Day, designed specifically for PRO delegates. This track will include:

  • Presentations on advocacy, policy, and patient engagement in research
  • Case studies from different countries on building and sustaining patient organisations
  • Structured collaboration sessions where PROs from different nations can compare approaches, discuss shared priorities, and explore joint projects
  • Opportunities to connect with clinicians, researchers, and other PROs in a focused setting

These sessions aim to strengthen the global network of lipoedema patient organisations and support more coordinated, effective advocacy worldwide.

Contributing to the program

PROs are encouraged to contribute to the broader scientific program as well as the dedicated PRO track. Abstracts may cover:

  • Patient‑led or co‑led research projects
  • Advocacy campaigns and policy achievements
  • Support programs, peer support models, and education initiatives
  • Patient perspectives on guidelines, care pathways, and health technology assessments

Selected PRO contributions may be scheduled as oral presentations, posters, or part of themed sessions and roundtables.

Patient Reps LWC Rome
Jen Bartlett LWC Rome

Eligibility to register as a PRO delegate

To register under the Patient Representative Organisation category, delegates must:

  • Be an official representative of a registered lipoedema patient charity or non‑profit organisation in their country
  • Have a clear role in governance, advocacy, programs, or representation within that organisation (e.g., board member, coordinator, official spokesperson)

This category is intended for formal patient organisations, not individual patients or informal support groups.

Organisations in the process of registration

We recognise that in some countries, lipoedema patient organisations are still in the process of formal registration. If your group is:

  • Actively working towards registered charity or non‑profit status, and
  • Functions as a patient representative body in your country

please contact the congress organisers before registering as a PRO. Attendance for such organisations will be considered on a case‑by‑case basis, taking into account your organisation’s structure, activities, and patient representation role.

E Cloney Canada LWC Rome
K Forster LWC Rome

Benefits for PRO delegates

PRO delegates receive:

  • Access to the dedicated PRO track on Pre‑Congress Day
  • Eligibility to attend selected collaboration and roundtable sessions during the main congress
  • Opportunities to network with international PROs, clinicians, and researchers
  • Inclusion in PRO‑focused meetings and gatherings (subject to program)

Patient Representative Organisations that are members of the Lipedema World Alliance (LWA) are eligible for up to two attendees to register for the congress at no cost.

Details on any supported places, bursaries, or special arrangements for PROs will be provided separately as they are finalised.

Participation in the Lipoedema Australia Conference

The Lipoedema Australia Conference, running alongside the Lipedema World Congress, warmly invites Patient Representative Organisations to submit abstracts for presentation in their patient‑focused program. This is an opportunity to share your organisation’s work, advocacy initiatives, and patient support models with a primarily patient and carer audience.

Subject to room capacity, PRO representatives are also welcome to attend selected sessions at the Lipoedema Australia Conference, in addition to the Lipedema World Congress. Details on how to submit an abstract and which sessions may be open to PRO delegates will be available via the Lipoedema Australia Conference website and program materials.

LWC Rome Patient Reps Dinner

How to register

When registering, select the Patient Representative Organisation category and provide details of your organisation and your role. If your organisation is still in the process of registration, use the contact form to describe your situation before completing your registration.

To access the LWA member offer, please contact the event organisers with details of your organisation and nominated attendees. The team will confirm eligibility and arrange access to the complimentary registrations.

The congress team looks forward to welcoming PRO delegates from around the world and working together to strengthen the global voice of people living with lipoedema.