National and regional nonprofit Organisations dedicated to fight against Lipedema and/or related pathologies
Brazil
Denmark
Germany
organisation's representative:
Susanne Helmbrecht
Susanne is a dedicated advocate for individuals with lymphatic diseases and has been a strong voice in the lymph self-help community since 2006. With personal experience of lymphedema, she founded a self-help group, leading it for 11 years, and later established the Lymphselbsthilfe e. V., a nationwide lymph self-help association to extend her impact.
With a background in psychology, Susanne brings a deep understanding of the emotional and psychological aspects of living with a lymphatic condition. Her primary focus is on self-management and enhancing the quality of life for those affected, a mission she pursues with passion and expertise. Recognizing the unique challenges faced by lipedema patients, she has developed specialized self-management courses that address their specific needs, filling a significant gap in Germany’s healthcare offerings.
Besides her educational initiatives, Susanne engages in policy work, like contributing to a medical guideline that shape care for lipedema sufferers, showcasing her holistic and patient-centered approach to advocacy.
Winter Verena
Verena has a personal connection to lipedema, a condition she has lived with since her youth but was only formally diagnosed three years ago. This long and often frustrating journey to understanding her own health has ignited a passion within her to help others avoid the same struggles. With this mission in mind, Verena became an active board member of the Lymphselbsthilfe e. V..
In her role, she serves as the international contact person and is particularly involved in creating the association’s member magazine, a task that aligns well with her professional expertise. Verena holds a Master’s degree in Linguistics with a focus on neural language processing and works as a technical editor for a medical technology company. Her ability to explain complex topics clearly is a strength she keenly applies to her work within the association, aiming to make a meaningful difference both locally and internationally in the field of lymphatic diseases awareness and support.
Italy
organisation's representative:
Valeria Giordano
Valeria Giordano, founder and president of LIO Lipedema Italia since 2018. Patient advocate for lipedema, endometriosis, ovarian cancer, she is a professional translator, specialised in English for special purposes (area of expertise: medical and audiovisual translation) and a foreign language lecturer and teacher with an ongoing PhD in language and translation (currently frozen since 2014 for health reasons). In 2023 she completed her II level Master Course in Patient Advocacy Management at the Faculty of Medicine and Surgery and Economics at the Università Cattolica del Sacro Cuore in Rome in collaboration with ALTEMS (Graduate School of Economics and Management of Healthcare Organizations), EngageMinds Hub – Consumer & Health Engagement Research Centre, ASAG (Graduate School of Psychology) and the “Agostino Gemelli” University Polyclinic Foundation. She is passionate about raising awareness of lipedema, giving voice to patients and their needs and empowering people with lipedema to feel there’s nothing wrong with them and they’re worth enough to be heard and receive proper care. She is one of the constituents of Lipedema World Alliance as a great opportunity to working together with healthcare professionals and researchers to promote evidence-based medicine and to bring patients’ values to their attention.
Marcella Oggiano
Marcella Oggiano is an Italian lipedema sufferer living abroad for 29 years. She has been a Buyer and Senior Product Manager for 17 years in the wine industry and she has volunteered in India and for the United Nations, skills that she put at the service of LIO Lipedema Italia in which she is the vicepresident since 2021. In LIO she focuses on international projects and collaborations and is involved in corporate fundraising activities. Marcella speaks four languages and is graduated in Economics and Finance in Germany, with a background training as an elementary school teacher, political science and Italian and Spanish linguistics. She is pragmatic, tenacious and curious like a child, but she loses her temper when she sees injustice.
Norway
Portugal
organisation's representative:
Manuela Lourenço Marques
Manuela Lourenço Marques has primary lymphedema and a complex clinical situation led her, in 2014, to cross the board to an internment in a Reference Centre where, in addition to an intense treatment, she acquired knowledge and lived experiences, not only around her illness but also on lipedema, which led her to immediately feel that these should be shared with all those who, like her, want a certified answer.
The path is not made alone, is her conviction and, in July 2015, she promoted the foundation of andLINFA, a patient organization that since its inception develops work also in lipedema and has had Lipedema patients in its governing bodies.
Manuela believes in networking, where patient representatives and healthcare professionals work as a team to find the best answer for the patient, their families, and carers.
The Chair of andLINFA is a board or founder member for other Associations and she is also an ePAG (European Patient Advocate) and ePAG co-chair in VASCERN.
In her professional area, Manuela is Senior Technician in management and she has, among others, a Pos-Graduation in International Project Management
Elisabete Vasconcelos
Spain
organisation's representative:
Maria Viu Rodriguez
Sweden
UK
organisation's representative:
Sharie Fetzer
Sharie has been Chair of charity Lipoedema UK since 2014, initiating numerous patient surveys and publications. She was on the task force of the Royal College of General Practitioners e learning course on Lipoedema and Wounds UK Best Practice Guidelines for the Management of LIpoedema. Sharie’s projects include diet and lifestyle research and NICE review of non-cosmetic liposuction for lipoedema patients. She is passionate about raising awareness of lipoedema to healthcare professionals and exited by the opportunity for outstanding doctors and researchers to create new standards of patient care through Lipedema World Alliance.
Kate Forster
Kate has been on the Board of Lipoedema UK since 2016 and is passionate about bringing the voice of those living with lipoedema together with professionals and researchers, to improve the quality of life for people with lipoedema and their families. Her interest in how to live your best life with lipoedema has led her to study aqua exercise; she holds a number of qualifications in aqua fitness, aqua yoga and aqua pilates. Kate has worked in medical devices/pharmaceutical companies for over 10 years in business/operational management. Kate is a Board or Committee member for several other charities, including Diabetes UK’s Council of People Living with Diabetes.
organisation's representative:
Isobel MacEwan
Isobel MacEwan is a prominent figure in the Lipoedema community in the UK. She was one of the founders of Talk Lipoedema, a charity dedicated to supporting women with Lipoedema. Her personal experience of living with Lipoedema has fuelled her passion for raising awareness about the condition.
In addition to her work with Talk Lipoedema, Isobel has also contributed to academic research on the subject. Isobel’s work has had a significant impact on the Lipoedema community in the UK. Her efforts have not only helped raise awareness about Lipoedema but also provided support and resources for those living with Lipoedema.
