General Information

The Patients Representatives Day is dedicated to fostering meaningful collaborations across various stakeholders, including the industry, advocacy groups, clinicians, researchers, patients, and their caregivers. Recognizing the pivotal role of patient-centricity in shaping disease management, treatment design, clinical trials, and healthcare solutions, this day focuses on obtaining valuable insights from patients and their representatives.
The Patients Representatives Day welcomes participation from patient advocates and caregivers, health care professionals, researchers, policymakers, and representatives from healthcare organizations. It is intended to serve as an interactive conference dedicated to advancing healthcare initiatives that are informed by the whole patient experience.

Venue:
Our venue is the Conference Center Ernst von Bergmann, situated in the Berliner Vorstadt of Potsdam, Germany. This historic villa, once home to renowned surgeon Ernst von Bergmann, has served as a center of education for over a century. It is fully accessible to all attendees.
Address: Tagungs- und Konferenzzentrum Ernst von Bergmann, Berliner Str. 62, 14467 Potsdam

Event Schedule:
The Patients Representatives Day program features lectures sharing experiences from diverse countries and healthcare systems. It includes “Patients Representatives Roundtables,” where patient representatives engage with medical professionals and senior researchers to explore effective ways of involving patients in research and decision-making processes.
The event commences at 2:00 p.m., following the “Master Class Liposuction” Live Surgery Day at the same location. After a brief meet & greet and a welcome by the organizers, the Lipedema Foundation will present a significant project for the future of lipedema care: The Research Roadmap. This will be followed by presentations and discussions about care situations in selected countries. Following a short break, the Patients Representatives Roundtables will convene, with the goal of developing a Lipedema Healthcare Essentials Document for Patients. The day concludes with a feedback session and an outlook into future collaborative efforts among various patient representative organizations.

Attending Organizations

Australia
Lipoedema Australia

Belgium
Lipedema Belgium

Brazil
ABRALI – Associação Brasileira de Pacientes Com Lipedema

Canada
The Weight of Lipedema

Denmark
DALYFO (Danish lymph and Lipedema association)

Finnland
Team Dercum

France
Asscociation de la Maladie du Lipoedème France (AMLF)

Germany
Lipödem Hilfe Deutschland e.V.

Germany
Lymphselbsthilfe e.V.

Ireland
Lipoedema Association of Ireland

Italy
LIO – Lipedema Italia

Netherlands
NLNet (Dutch Lymphoedema Framework and Lipodema Network)

Norway
Norwegian Lymphedema and Lipedema Association

Portugal
andLINFA

Spain
Adalipe

Sweden
Svenska Ödemförbundet (SÖF)

UK
Lipoedema UK

USA
Fat Disorders Rescource Society

USA
The Lipedema Project

If you have any question,
feel free to contact us

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