Scientific and medical advisors
HLRCC Alliance
The HLRCC Alliance is an advisory scientific and medical community dedicated to advancing awareness, medical knowledge, and research for hereditary leiomyomatosis and renal cell cancer (HLRCC). This network of experts works closely with the HLRCC Foundation to support patients, families, and the growing HLRCC community.
What the Alliance does
Mission and objectives
The HLRCC Alliance aims to:
- Enhance awareness of HLRCC among medical professionals and the general public
- Promote scientific inquiry and expertise in HLRCC research
- Improve treatment and management strategies for HLRCC patients
- Support the needs of families and individuals affected by HLRCC
Key activities
- Research collaboration
- Brings together researchers, clinicians, and institutions to speed up scientific discoveries and improve patient outcomes.
- Medical education
- Symposiums, webinars, and educational materials help healthcare providers stay informed about HLRCC developments.
- Patient support
- Working with the HLRCC Foundation so that scientific advances become practical support for patients and families.
- Clinical guidelines
- Contributes to developing and updating clinical guidelines for HLRCC diagnosis, treatment, and management.
Partnership with the HLRCC Foundation
The Alliance works closely with the HLRCC Foundation so that scientific and medical expertise directly benefits the patient community. This partnership allows for:
- Rapid sharing of new research findings with patients and families
- Including patient perspectives in research priorities
- Development of patient-centered clinical trials and studies
Members include experts in:
- Medical oncology
- Urology
- Genetics
- Pathology
- Research
- Other fields related to HLRCC
Alliance members
16 members, grouped by area of work and listed alphabetically. Where available, a link opens the member’s profile on their institution’s website.
Kidney cancer care and nephrology 6 members
Jan Degenhardt, MD
Clinician Scientist
University of Cologne, Faculty of Medicine and University Hospital Cologne
Cologne, Germany
Dean Elhag, MD
Hematologist and Medical Oncologist
AdventHealth
Littleton, CO, USA
W. Marston Linehan, MD
Chief, Urologic Oncology Branch
National Cancer Institute
Bethesda, MD, USA
Prof. Dr. med. Roman-Ulrich Müller
Director, Department of Nephrology
University Hospital Düsseldorf (Heinrich Heine University Düsseldorf)
Düsseldorf, Germany
University Hospital Düsseldorf for Roman-Ulrich Müller (external site)
Brian Shuch, MD
Director of the Kidney Cancer Program and the Alvin & Carrie Meinhardt Endowed Chair in Kidney Cancer Research
UCLA
Los Angeles, CA, USA
Yousef Zakharia, MD
Medical Oncologist; Chair, Genitourinary Malignancy Disease Group, Mayo Clinic Comprehensive Cancer Center
Mayo Clinic
Phoenix, AZ, USA
Gynecology, dermatology and pathology 4 members
Mostafa Borahay, MD, PhD, MBA
Associate Professor; Director, Division of General Obstetrics and Gynecology & Minimally Invasive Gynecologic Surgery
Johns Hopkins University
Baltimore, MD, USA
Neil Rajan, MD, PhD
Professor of Dermatogenetics and Honorary Consultant Dermatologist
Newcastle University
Newcastle upon Tyne, UK
Yuri Tolkach, MD, PhD
Professor (W2 Heisenberg Professorship) of Artificial Intelligence in Pathology
Institute of Pathology, University Hospital Cologne
Cologne, Germany
University Hospital Cologne for Yuri Tolkach (external site)
Outi Uimari, MD, PhD
University Lecturer, Research Unit of Population Health, Faculty of Medicine
University of Oulu; Oulu University Hospital
Oulu, Finland
Laboratory and population research 3 members
Stephanie Bonn, PhD
Department of Medicine, Huddinge, Karolinska Institutet
Sweden
Karolinska Institutet profile for Stephanie Bonn (external site)
Christian Frezza, PhD
Principal Investigator; Alexander von Humboldt Professor of Metabolomics in Aging
CECAD, University of Cologne
Cologne, Germany
Aikseng Ooi, PhD
Associate Professor, Hematology/Oncology, University of Florida; Principal Investigator
The Herbert Wertheim UF Scripps Institute for Biomedical Innovation & Technology
Jupiter, FL, USA
Drug development and education 3 members
Jason Dicola, BS
Bachelor of Science in Neuroscience, Instructor of physiology and anatomy
Montgomery County Community College
PA, USA
Salvatore La Rosa, PhD
Chief Scientific Officer; oversees research initiatives and patient services. Formerly Chief Scientific Officer, Children's Tumor Foundation.
Kidney Cancer Association (KCA)
Miami, FL, USA
Kidney Cancer Association for Salvatore La Rosa (external site)
Will Motley, MD
Medical doctor and neuroscience expert who works in clinical development and drug development
Being listed here shows membership of the HLRCC Alliance. It does not mean a member is taking new patients. To find clinicians with HLRCC experience, use our specialist map.
Titles and affiliations last reviewed October 2026.
Next steps
Looking for care or a study?
Use our specialist map to find clinicians with HLRCC experience, or browse HLRCC clinical trials.
Questions about the HLRCC Alliance? Contact the HLRCC Foundation.