The Adrenal Patient Forum webinar is free to attend. Please register by clicking the link below.
Programme*
10:00 - 10:05
Welcome and introduction
Prof. Stefanie Hahner (Germany)
Session 1
Chairs: Prof. Stefanie Hahner (Germany) & Jennifer Rayner (UK)
10:05 - 10:20
Understanding ACC and standard treatments
Dr. Rossella Libe (France)
10:20 - 10:35
Mitotane: Effectiveness and managing side effects
Dr. Barbara Altieri (Italy)
10:35 - 10:45
Patient perspective: Beginning of the journey
Guido Frisiani (Italy)
10:45 - 11:15
Q&A
11:15 - 11:30
Break
Session 2
Chairs: Dr. Lorenzo Tucci (Italy) & Jo Grey (UK)
11:30 - 11:45
Psychological support throughout the patient journey
Prof. Imad Maatouk (Germany)
11:45 - 12:00
New treatments for ACC
Dr. Cristina Ronchi (UK)
12:00 - 12:10
Patient perspective: long-term survivor journey
Marc Büdenbender (Germany)
12:10 - 12:35
Q&A
12:35 - 13:00
Open Q&A and session close
This educational webinar has a dedicated Questions & Answers time, in which the panellists will aim to discuss questions from the audience.
Please note:
- We are not able to give medical advice or answer questions related to particular circumstances of a patient. Please contact your doctor if you require medical advice.
- We may not be able to answer all questions, but we will endeavour to cover the common interests.
*may be subject to change
This event will be held in English. Simultaneous translations into French, German and Italian will be available.
Please note: The live webinar can only support 1000 delegates.
Clinical experts
Prof. Stefanie Hahner, Germany
Dr. Alessandro Prete, UK
Patient organisations representatives
Marc Büdenbender, Germany, Let’s Cure ACC
Jo Grey, UK, ACC Support UK
Prof. Stefanie Hahner (Germany)
Stefanie Hahner is an internist/endocrinologist and Professor of Medicine at the University of Würzburg, Germany, She currently serves as the deputy head of the Division of Endocrinology of the University Hospital Würzburg. Dr. Hahner completed her medical studies at the University of Würzburg Medical School in 2001. She subsequently held the positions of Research Fellow, Clinical Associate and Fellow at the University Hospital of Würzburg under the mentorship of Prof. Bruno Allolio. In 2015, she was appointed Professor of Endocrinology. Since 2015, Dr. Hahner has also held the position of Vice Dean of the Medical Faculty at the University of Würzburg, where she is particularly dedicated to advancing the careers of young clinician-scientists. Her research primarily focuses on translational studies in adrenal tumors, including adrenocortical carcinoma, as well as clinical investigations in patients with adrenal insufficiency and hypoparathyroidism. She leads the Molecular Adrenal Imaging Group at the University Hospital of Würzburg, where her team has developed adrenal-specific radiopharmaceuticals to improve the differential diagnosis and treatment of adrenal tumors.
Jennifer Rayner (UK)
Jennie was first diagnosed with ACC in September 2018 and soon after joined AMEND and ACC Support UK. Since then Jennie has represented ACC at various academic research events and appeared in the series of ACC Support UK patient information videos produced in 2019. In 2023 Jennie became an AMEND peer support volunteer and has chaired ACC disease specific sessions at annual patient information days and currently chairs ACC peer support meetings via Zoom.
Dr. Rossella Libe (France)
Rossella Libé is a Clinician Scientist with long-standing expertise in endocrine tumour management. She works in the endocrinology department of Cochin Hospital and endocrine oncology of Gustave Roussy. She is the Medical Coordinator of the French ENDOCAN COMETE network. She organises and coordinates multidisciplinary tumour boards, the French guidelines for ACC and malignant pheo-paraganglioma, national participation in the ENSAT registry, and medical and patient information meetings.
Dr. Barbara Altieri (Italy)
Barbara Altieri is Associate Professor in Endocrinology at the University of Parma, Italy. She maintains an active collaboration with the Division of Endocrinology and Diabetes at University Hospital of Würzburg, Germany, where she worked as Clinical Scientist from 2019 to 2025. She is the currently Head of the Adrenocortical Carcinoma (ACC) Working Group within the European Network for the Study of Adrenal Tumors (ENSAT). Barbara obtained my Medical Degree from the Catholic University of the Sacred Heart in Rome, where she also completed a five-year specialization in Endocrinology and earned her PhD with 'Doctor Europaeus' qualification in 2019.
Guido Frisiani (Italy)
Born and raised in Italy. Studied Engineering in Italy, and then Business Administration in Fontainebleau (France). Happily married to Monica for now 33 yrs...now empty nested as our daughter married last year and our son earlier this year. Professionally, a consultant with McKinsey & Co since 1995. Diagnosed with ACC back in 2022, underwent surgery in Brescia (Italy) in May...and have been on mitotane therapy since).
Dr. Lorenzo Tucci
Dr. Lorenzo is an Endocrinology and Metabolic Diseases Consultant at the IRCCS Sant’Orsola-Malpighi Polyclinic of Bologna in Italy and a PhD student in Endocrine Molecular Pathology at the University of Bologna. He currently works at the University of Birmingham and Queen Elizabeth Hospital Birmingham in the United Kingdom as a Visiting Clinical Research Fellow.
His clinical and research work focuses on adrenal tumours, with particular expertise in radiomics, radiogenomics, and liquid biopsy approaches (including circulating cell-free DNA) for the diagnosis and monitoring of adrenocortical carcinoma. Dr. Tucci has authored several peer-reviewed publications, contributed to an international textbook, and presented his work at major international meetings (ECE, ENS@T, SfE BES, IACS), receiving multiple awards from European societies.
Jo Grey (UK)
Jo Grey is the CEO of the Association for Multiple Endocrine Neoplasia Disorders (AMEND), a charity registered in England and Wales, which provides free information resources and support services to patient communities affected by a range of rare endocrine diseases, including ACC. Jo is a rare, genetic, endocrine disease patient herself and therefore knows and understands, from first-hand experience, the struggles and needs of these communities. Just two years after her diagnosis in 2000, Jo became interested in learning more about her own disease and those of others in the endocrine community and began contributing to the newly registered charity by writing the very first patient information booklets and leaflets. Jo had volunteered for AMEND from 2003, leading the organisation since 2008, and becoming CEO in 2013. She is the only full-time member of staff at AMEND, representing patients in a variety of arenas, managing volunteers and professional support services, sourcing funding, and continuing to develop and update the charity’s patient information.
Prof. Imad Maatouk (Germany)
Professor Imad Maatouk, MD, is a specialist in internal medicine and psychosomatic medicine and psychotherapy. After studying human medicine in Göttingen and Paris, he completed his clinical and scientific training at Heidelberg University Hospital from 2007 to 2016. After being appointed senior physician in 2016, he headed various psychotherapy wards and the psycho-oncology section at the Clinic for General Internal Medicine and Psychosomatics and at the National Center for Tumor Diseases in Heidelberg. In November 2021, he accepted the position of Professor of Medical Psychosomatics at Medical Clinic II at the University Medical Center Würzburg, where he took over as head of the Psychosomatics, Psychotherapy, and Psycho-Oncology Department. Since November 2024, he has held the Chair of Integrated Psychosomatic Medicine and Psychotherapy. Clinically and scientifically, he is involved in the development of measures to promote mental health and quality of life in physical illnesses, the development of new multimodal therapy concepts, and the use of new, digitally supported therapy approaches in psycho-oncology. His central concern is that patients continue to be at the center of a rapidly developing high-performance medicine and that the psychosocial subjects and disciplines, as part of this high-performance medicine, continue to develop the support of the individual on a scientifically founded basis.
Dr. Cristina Ronchi (UK)
Cristina Ronchi is Reader in Endocrine Oncology at the University of Birmingham and Honorary Consultant Endocrinologist at the Queen Elizabeth Hospital Birmingham. She has long-standing clinical and translational expertise in endocrine tumors, and in particular in adrenocortical carcinoma, collaborates with world-leading groups across the globe and coordinates several multicentre projects. Dr. Ronchi is clinically active as Endocrinologist and leads the Adrenal Tumour Service at the University Hospital Birmingham NHS Trust – a European Excellence Centre. Finally, Dr Ronchi has been recently appointed as first female President of the ENSAT, the European Network for the Study of Adrenal Tumors and is particularly active in research dissemination and education, as well as public and patient engagement.
Marc Büdenbender (Germany)
Marc was born in 1972 in Germany and now lives with his wife near Oldenburg, Lower Saxony, after spending more than 20 years in Switzerland. Holding a PhD in Economics, he looks back on a dynamic international career in banking and IT. Since the age of 12, sports have been a central part of his life—first in athletics, and later as a dedicated competitive cross-country skier, participating in national and international competitions. Marc is a survivor of stage 4 adrenocortical carcinoma (ACC) and a board member of Let’s Cure ACC, an international patient-led organization dedicated to improving outcomes for those affected by this ultra-rare cancer. Diagnosed in 2017 at age 45 with a 20 cm tumor, he underwent major surgery, multiple recurrences, overall ten cycles of EDP chemotherapy, and seven years of Mitotane treatment. Despite severe side effects and life-threatening complications, Marc has been tumor-free since 2020. Today, he feels profound gratitude—for a life rich in experiences and for the freedom to do the things he loves: traveling again, enjoying time with his loved ones, and having taken up golf as a new hobby.
This event is kindly sponsored by:
22/05/2025