Events

HLRCC Symposium

Clinicians, researchers and patient advocates coming together to share what is known about HLRCC. Watch the 2024 symposium in full, and ask to hear about future events.

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2024 Symposium highlights

On June 20, 2024, which was World Kidney Cancer Day, the HLRCC Alliance's first symposium brought patients, families, clinicians and researchers together online. The two-hour Zoom webinar ran from noon–2 p.m. ET (6–8 p.m. CEST). It was held on behalf of the HLRCC Alliance, a network of HLRCC experts and patient advocates founded in 2023, in partnership with the HLRCC Foundation, the European Rare Kidney Disease Reference Network (ERKNet) and the European Renal Association (ERA).

Prof. Roman-Ulrich Müller, then of the University Hospital Cologne, introduced the Alliance and its plans, which include an international HLRCC registry, a research biobank, education for clinicians and a short survey asking where HLRCC patients are treated. Jan Degenhardt, MD, described HLRCC as a multidisciplinary challenge. Laura Esfeller shared the patient perspective. Dr. Neil Rajan responded to audience questions about skin leiomyomas, and Dr. Outi Uimari spoke about uterine fibroids. Christian Frezza, PhD, explained the biology of fumarate hydratase (FH), the enzyme affected in HLRCC. Dr. W. Marston Linehan of the National Cancer Institute spoke on managing HLRCC-related kidney cancer.

HLRCC is still underdiagnosed, and the path to the right diagnosis is often long and difficult. The HLRCC Alliance aims to improve diagnosis and treatment by connecting clinicians, researchers and patient advocates. The full recording is free to watch on YouTube.

Highlights

When and where: June 20, 2024, noon–2 p.m. ET (6–8 p.m. CEST), World Kidney Cancer Day. Held online as a Zoom webinar. Organized by the HLRCC Alliance with the HLRCC Foundation, ERKNet and ERA. IKCC is also listed as a cooperating organization.
Milestone: This was the HLRCC Alliance's first symposium and its first public event.
Building a network: Prof. Müller outlined the Alliance's goals: an international registry, a biobank, clinician education leading toward HLRCC expert centers, and a 2–3 minute clinician survey on where patients are treated.
Many specialties, one condition: Jan Degenhardt, MD, gave the talk “HLRCC – a multidisciplinary challenge.”
The patient voice: Laura Esfeller gave “HLRCC – the patient perspective.”
Skin and fibroids: Dermatologist Dr. Neil Rajan responded to audience questions about skin leiomyomas. Gynecologist Dr. Outi Uimari of Finland spoke about uterine fibroids.
The science: Christian Frezza, PhD, presented “HLRCC – a biologist's perspective,” listed in the program as “Fumarate Hydratase in HLRCC: What do we know so far?”
Kidney cancer care: Dr. W. Marston Linehan (National Cancer Institute, Bethesda, MD) presented “Diagnosis and Management of HLRCC-Associated Renal Cancer” (listed in the final program as “Management of HLRCC-Renal Cancer”). He said NCI is glad to see people with HLRCC from across the U.S. and around the world, including through virtual consultations.
Recording: 2024 HLRCC Symposium (full recording, 2:09:39), HLRCC Foundation YouTube channel. It is also on hlrccalliance.org.
Program: ERKNet program flyer (PDF, April 2024). The final program added Dr. Linehan's talk.

Sources: ERKNet event listing, HLRCC Alliance news and the recording. This summary is for education only and is not medical advice.

Recording

Watch the 2024 Symposium

2024 HLRCC Symposium: Kidney Cancer, Fibroids, Skin and FH Research. Jump to any talk or discussion below.

Title slide: HLRCC Symposium, presented in collaboration with the HLRCC Foundation and HLRCC Alliance

Full recording, 2:09:39, on the HLRCC Foundation YouTube channel. More talks on our video resources page.

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