| Organization name (if representing yourself, please write "individual") | Point of contact name | Point of contact email | City and state of your organization | In 200 words or less, describe your organization's current focus. | In 200 words or less, tell us how your organization could contribute to technical performers. |
| Lipedema Foundation | Jonathan Kartt | jonathan@lipedema.org | New York, NY | The Lipedema Foundation (LF) is a private, non-fundraising foundation that supports research to define, diagnose and develop treatments for Lipedema. It is the world’s largest funder of Lipedema research, with more than $12.5 million awarded in the US and internationally. The Foundation’s research focuses on collaboration, connecting patients and researchers, and fostering basic and translational research across disciplines including physiology, genomics, immunology and endocrinology. Additionally, LF works to raise awareness among clinicians, people with Lipedema, families and caregivers, and the general public. | - Advisory and access to clinician, researcher, and patient advisors, through the Lipedema Foundation's network
- Recruitment support (e.g., through clinical trial finder tool, Lipedema Foundation Registry, digital lists, and social media reach)
- Access to tissue repository resources |
| Lymphatic Education & Research Netwrok | Phyllis Fried | PFried@lymphaticnetwork.org | New York, NY | LE&RN's mission is to fight lymphatic diseases through education, research, and advocacy. We seek to accelerate the prevention, treatments and cures for lymphedema, lipedema, lymphatic anomalies, and the continuum of lymphatic diseases.
To accomplish these goals, LE&RN sponsors an international patient registry and biorepository, live-stream symposiums, the peer-reviewed journal Lymphatic Research & Biology, weekly e-newsletters, scholarship grants to lymphedema therapists, conference travel awards to young researchers, and a vibrant website with features such as Ask the Experts, connecting patients with the field’s more renowned practitioners. LE&RN has Chapters and Centers of Excellence globally. In 2016, LE&RN created World Lymphedema Day on March 6th, which was established by unanimous vote of the United States Senate.
| LE&RN has a broad outreach to researchers in the field and can be instrumental in helping to connect various researchers. LE&RN also has over 70 Centers of Excellence globally, which provide a patient population for research study while connecting our organization to the world's leading practitioners.
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| Individual | Juliana Rodegheri Brito | rodegheri.julie@gmail.com | Denver, CO | As a parent of a child diagnosed with generalized lymphatic anomaly (GLA), I’ve experienced the complexities of managing this rare condition firsthand. Despite my background in biomedical research, including work on the mTOR pathway, lymphatic disorders were unfamiliar to me, which highlighted the critical need for more research, advocacy, and resources for affected families. I hold a Master's in Human Genetics and Genetic Counseling from Stanford University, where my thesis focused on the molecular diagnostic odyssey of patients with lymphatic malformations. My work aimed to identify barriers to diagnosis, enhance clinical care, and promote research on less invasive, more sensitive methodologies for genomic profiling and targeted therapies.
As a parent, I am deeply committed to raising awareness and supporting patients, families, researchers, and clinicians in advancing lymphatic medicine. As a professional, I strive to bridge the gap between research advancements and clinical practice. Incorporating patient and parental perspectives is essential to fostering patient-centered care by improving accessibility, promoting equity in care opportunities, and empowering families in shared decision-making. | Expertise in genetics and genetic counseling: Proficient in somatic and germline testing, molecular biology, variant interpretation, communication of complex information, and patient advocacy. These skills are particularly beneficial for projects related to pharmacologic, gene, and cell-based therapeutic interventions. My clinical experience supports understanding rare and chronic conditions involving lymphatic dysfunction, helping to guide more personalized treatment approaches.
Community engagement: Fluent in Spanish and Portuguese, enabling outreach and support for diverse patient populations. My communication skills are essential in discussing complex information, building relationships, and bridging gaps between stakeholders, thereby assisting in the development of technologies that serve a broad community.
Research and personal experience: Insights from both research and personal experience navigating the medical system with a rare condition provide a unique perspective on patient care and the challenges families face. I have a personal stake in advancing lymphatic medicine and am committed to working relentlessly to further our project and support families like mine. |
| Individual | Julie Leclercq | herse.00-raclette@icloud.com | Montpellier, Herault | Systemic lymphoedema | Looking for an alternative to compression/ contention therapies |
| Individual | Fenton G. Groff | Fentg3@gmail.com | Ventnor City, NJ 08406 | I was diagnosed with Primary Lymphedema (lower extremity, "PLE") Milroys Disease circa 1976 at Children's Hospital of Philadelphia, PA. My diagnosis has been confirmed by DNA testing from the NIH (circa 2023). I am obese, stage 3 PLE, and a successful patient lobbyist & advocate. I am ambulatory, and can commit to "50 Volunteer Ambassador" sessions. I am excited about new pharmaceutical treatments. | I would be instrumental in explaining my (almost) 50 years of personal lymphedema experience. I am a twenty year allied healthcare professional and registered radiographer. I am currently finishing my Master's Degree Program in Public Health at GCU.
I have travelled to Europe to experience world class lymphedema care. |
