GLIDE Patient Engagement Profiles

Thank you for showing an interest in ARPA-H’s Groundbreaking Lymphatic Interventions and Drug Exploration (GLIDE) program. This page is designed to help facilitate connections between groups that are champions for positive patient experiences with GLIDE technical proposal teams.

If either you or your organization are interested in teaming, please submit your information via the link below. Your details will then be added to the list, which is publicly available.

GLIDE Patient Engagement Profile Form

Please note that by publishing the patient engagement profiles list, ARPA-H is not endorsing, sponsoring, or otherwise evaluating the qualifications of the individuals or organizations included here. Submissions to the list are reviewed and updated periodically.

GLIDE Patient Teaming

To narrow the results in the Teaming Profiles List, please use the input below to filter results based on your search term. The list will filter as you type.

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.
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.
RASopathies Network	Beth Stronach	bstronach@rasopathiesnet.org	Pittsburgh, PA	RASopathies represent the largest collection of rare congenital syndromes, such as cardio-facio-cutaneous syndrome, Costello syndrome, neurofibromatosis type 1 (NF1), and Noonan syndrome, caused by aberrant signaling in the cellular RAS/MAP kinase cascade. These conditions significantly impact numerous body systems leading to serious health challenges and increased cancer risk. RASopathies are the most common cause of central conducting lymphatic anomalies and one in five individuals with a RASopathy have some form of lymphatic dysplasia. Importantly, aside from NF1, there are no approved treatments targeting dysfunctional RAS/MAPK signaling in RASopathy conditions. RASopathies Network is the leading advocacy organization dedicated to advancing research on non-NF1 RASopathy conditions. Our goal is to reduce mortality and disability while improving quality of life for affected individuals. We achieve this by fostering collaboration among researchers, clinicians, and patient communities. In practice, we convene biennial international scientific symposia, fund pilot research projects, support early-career investigators, and provide valuable resources to affected families and partners. We promote essential collaborations across diverse fields of study and expertise. We also focus on timely communication, education for patients about their conditions, and participant recruitment for research and clinical studies. Our efforts create a sense of urgency and shared commitment to accelerate progress.	Relevant to the GLIDE program, there are published studies demonstrating lymphatic anomalies in both mosaic and germline RASopathies. Several case studies also highlight the off-label use of MEK inhibitors, which serve as proof of concept for normalizing disrupted RAS/MAPK signaling and addressing lymphatic dysfunction. Our organization can contribute to this program through our network connections, testimonials from patients, contact registries, partner organizations, and experience with therapeutic repurposing.
Individual	Pattie Cornute	pattie.cornute@gmail.com	Saratoga Springs, NY	I am a stage 3 Lipolymphedema (primary lipedema with secondary lymphedema) patient and advocate. In 2013 I founded Lipedema Fitness to help spread awareness of lipedema, and the importance of staying active with these debilitating conditions. We follow an #allorsomething motto, and support those in our community with emotional and physical fitness support to slow progression. Creating an annual Lipedema Triathlon as a focal annual event, this year will be our 10th.	As a late stage patient, finding answers becomes key, we are in a critical place, cannot afford to wait 20 years for most research, so we do lots of personal research and experimenting, and we share our findings between the patient and medical partners in our community. With almost 17K lipedema patient members, we offer a great way to connect with lipedema patients of all stages and ages.