named programs · 4 · from sources
What they call their work
Centres of Excellence Program
Initiative to establish and oversee specialized medical centers focused on lymphatic disease care and research, guided by a global oversight committee
National Lymphedema Awareness Campaign
Public awareness initiative funded by the CDC to educate the public and medical community about lymphedema and lymphatic diseases
Scientific Research Support
Funds and collaborates on research projects related to lymphatic anomalies, lipedema, and lymphedema detection using advanced imaging and biomarkers
World Lymphedema Day
Annual global event featuring official videos, keynote addresses, and outreach to promote understanding and early detection of lymphedema
activities · 7 groups
What they do
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Healthcare Policy Advocacy 1 activity
- Advancing policy and public awareness of lymphatic diseasesSecures federal and state funding for lymphatic research; advocates for inclusion of lymphedema in government research programs; drafts and passes legislative resolutions including World Lymphedema Day and hospital education mandates; produces public service announcements and media campaigns.
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Regional Chapter Network Support 1 activity
- Building global research and patient support infrastructureOperates state and international chapters, Centers of Excellence, and a global patient registry; facilitates collaboration between patients and professionals; builds research infrastructure for academic and industry partners.
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Biomedical Research and Innovation 1 activity
- Conducting and publishing lymphatic disease researchLeads NIH- and CPRIT-funded longitudinal studies, clinical research on lymphatic treatments, and publishes peer-reviewed research; maintains a curated list of key scientific publications and produces major reports on lymphatic diseases.
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Organizational Newsletter Production and Distribution 1 activity
- Distributing educational and advocacy communicationsProduces and distributes weekly and bimonthly newsletters, online symposia, and public communications to inform the lymphatic disease community about research, education, and advocacy developments.
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Medical Research Funding 1 activity
- Funding research and training in lymphatic diseasesAwards grants to support research, postdoctoral scientists, mid-career translational researchers, and the endowed chair in lymphatic research; funds research institutions globally through targeted grant programs.
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Disease-Specific Clinical & Patient Education 1 activity
- Operating patient and professional education programsHosts live and virtual symposia, webinars, workshops, and educational events multiple times per year for patients, families, and medical professionals; produces video libraries and hybrid educational modules on lymphatic diseases.
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Healthcare Provider Directories and Clinical Support Services 1 activity
- Providing direct patient support and resourcesOperates a free resource center responding to patient inquiries, maintains an online 'Ask The Experts' forum, hosts a Virtual Expo connecting patients with service providers, and conducts screening and awareness events internationally.
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financials · form 990 · fy2025
revenue
Total revenue$1.28M
Contributions & grants$1.14M89%
Program service revenue$00%
Investment income$114K9%
Other revenue$27K
expenses
Total expenses$1.77M
Program expenses81%
Admin / overhead9%
Fundraising9%
Salaries & benefits$1.16M
Grants paid out$24K
Largest expense lineCompensation
balance sheet
Total assets$3.59M
Cash$487K
Investments$3.06M
Liabilities$465K
Net assets$3.12M
Liquid reserves24.1 mo
6 years on record · 2020–2025 · YoY revenue -26.9%
leadership · form 990 part vii · fy2025
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| WILLIAM REPICCI | PRESIDENT & CEO | 40 | $372K |
| Maria Celia Dupecher | Vice President for Scientific Affairs | 40 | $146K |
board members · 6
- DAVE MCDOWELL — CHAIRPERSON
- DEBBIE MILES — TREASURER
- DORON ILAN MD — DIRECTOR
- JOSEPH DAYAN MD — DIRECTOR
- MELISSA ALDRICH PHD — SECRETARY
- RICK PETTY — DIRECTOR
relationships · 61
Who they work with
- Academy of Lymphatic Studies Partner — Participating exhibitor in LE&RN's Virtual Expo
- Advanced Research Projects Agency for Health (ARPA-H) Government — Successfully lobbied for "lymphatic diseases" to be designated a research subject, enabling $300M in translational research funding.
- Airos Medical Partner — Participating exhibitor in LE&RN's Virtual Expo
- American Breast Care Partner — Participating exhibitor in LE&RN's Virtual Expo
- American Society of Breast Surgeons Partner — Hosts annual meetings where LE&RN delivers keynote addresses.
- Ask The Experts Partner — Volunteer online forum referred to for treatment-related questions not addressed by healthcare providers.
- Bio Compression Systems Partner — Participating exhibitor in LE&RN's Virtual Expo
- BioSupportMD Partner — Participating exhibitor in LE&RN's Virtual Expo
- CHUV Angiology Department Partner — Co-hosts an informational café meeting with the Swiss Lymphoedema Association on World Lymphedema Day.
- Celltaxis Partner — Participating exhibitor in LE&RN's Virtual Expo
- Centers for Disease Control & Prevention Government — Received a three-year, $1.2M Chronic Disease Education & Awareness grant for a cancer-related lymphedema education campaign.
- Centers for Disease Control and Prevention Government — Funds LE&RN’s National Lymphedema Awareness Campaign.
- Chulabhorn Hospital Partner — Co-hosts a Facebook Live event for World Lymphedema Day.
- Congressional Government — Secured ongoing Congressional support for lymphatic research and diseases.
- Department of Defense Government — Advocated for inclusion of lymphatic diseases in the DoD’s Peer-Reviewed Medical Research Program, unlocking millions in research funding.
- Finnish Lymphedema Association Partner — Collaborates on organizing an expert lecture via Teams about effective lymphedema treatment.
- Gordon Research Conference in Lymphatics Partner — Hosts major scientific conferences where LE&RN participates with keynote addresses.
- Harvard Medical School Partner — Hosts the Lymphedema Symposium where LE&RN delivers keynote addresses.
- Harvard University Partner — Contributed to the compilation of key publications on lymphatics through researcher Tim Padera.
- Harvard University Medical Schools Partner — Co-organized the first Lymphedema Symposium in Boston, MA.
- HemaOnko Partner — Collaborates with the Macedonian Association for Reconstructive Microsurgery on a panel discussion about lymphedema.
- Herantis Pharma Partner — Participating exhibitor in LE&RN's Virtual Expo
- ImpediMed Partner — Participating exhibitor in LE&RN's Virtual Expo
- Jobst Partner — Participating exhibitor in LE&RN's Virtual Expo
- Juzo Partner — Participating exhibitor in LE&RN's Virtual Expo
- Klose Training Partner — Participating exhibitor in LE&RN's Virtual Expo
- Koya Medical Partner — Participating exhibitor in LE&RN's Virtual Expo
- L&R USA Partner — Participating exhibitor in LE&RN's Virtual Expo
- LE&RN Chapter Interest Form Partner — Platform used to collect expressions of interest for starting new local chapters.
- Lymph Notes Partner — Co-sponsors the U.S. Lymphedema Therapist Scholarship.
+ 31 more
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Centralized Patient Registry for Research Accelerationmethodology: centralized_patient_registryBy creating a centralized global patient registry, LE&RN accelerates research on lymphatic diseases because aggregated clinical and patient-reported data enables faster identification of patterns, improved study recruitment, and stronger evidence for treatment development.
- Evidence-Based Education to Improve Early Detectionmethodology: evidence_based_educationBy delivering evidence-based education to both clinical and community audiences, LE&RN improves early detection and management of lymphatic diseases because standardized, scientifically validated knowledge reduces diagnostic delays and promotes timely intervention.
- Integrated Research-Education-Advocacy Modelmethodology: integrated_research_education_advocacyBy combining scientific research, public education, and policy advocacy in a unified approach, LE&RN drives systemic change in lymphatic disease recognition and care because synergistic efforts across these domains amplify impact beyond what any single pillar could achieve.
- Multidisciplinary Collaboration to Advance Researchmethodology: multi_stakeholder_collaborationBy convening scientists, clinicians, patients, and advocates, LE&RN strengthens lymphatic research because cross-sector collaboration fosters innovation, aligns priorities, and builds institutional legitimacy for the field.