Invasive fungal infections (IFI) represent a significant burden for patients and are often underestimated in clinical practice and public awareness. Patient perspectives remain inadequately addressed in research and healthcare initiatives. This includes missing patient and healthcare professional education, diagnostic delays and side effects of treatments, leading to prolonged and complex patient journeys. The Working Group aims to improve awareness, advocacy, and to integrate patient-centered outcomes into clinical practice and research by actively involving patients and caregivers.
Objective 1: Identify needs and challenges faced by patients, relatives and caregivers
Structured interviews to document patient journeys with IFI to incorporate individual experience into advocacy efforts and research proposals. Interviews are planned with IFI patients from low, middle, and high-income countries, to identify and address needs aligned with their local requirements. Results will be analyzed and published to gain visibility.
Objective 2: Establish a platform for patients, relatives and caregivers
To foster patient education and disease awareness, we will create a virtual hub for patients and relatives to exchange experiences, access educational materials, and participate in webinars on IFI topics relevant to patients as identified in objective 1 and led by experts in the field. Such material may include information on fungal diseases, diagnostics, treatments, and follow-up care tailored for patients and caregivers in accessible language. Translation of all educational material in several languages is planned to allow worldwide access. Peer-to-peer support programs will be promoted on this platform. We aim to connect with existing regional and/or disease-specific initiatives such as the
Aspergillosis Patient Group (NHS-funded, UK), and the Mycology Advocacy, Research and Education (MyCARE) based in the US.
Objective 3: Filling the gap in research activities
We aim to include the patient’s perspective in research development and support patients to access specialized health care services including clinical trials The Working Group will therefore serve as a link between patients, clinicians, and researchers to address unmet needs in the management of invasive mycoses. The development of patient-related outcome measures (PROMs) for IFI will be developed together with IFI patients and survivors in order to be integrated into trials. For coccidiomycosis, the first ever IFI-specific PROMs were recently developed based on interviews of 25 patients (Harvey et al, 2024). By embedding patient experiences (PREMs) and needs into the picture of clinical research and public advocacy, the group aims to improve diagnostic processes, therapeutic outcomes, and the overall quality of life for individuals affected by IFI. Lastly, the continuous exchange with patients in objective 1 and 2 will help revealing priority research questions.
Cornelia Lass-Flörl (Austria)
“Fungal infections often go unnoticed until it’s too late. Through education, I want to change that – empowering people to protect themselves and to recognize the risks hidden in their everyday environment.”
Rita Oladele (Nigeria)
“For me, advocacy is about visibility. People with chronic fungal diseases deserve understanding, empathy, and information that helps them manage their condition with dignity.”
Olga Mashedi (Kenya)
“Behind every fungal infection are social and economic realities that shape a patient’s journey. I want to bring these voices into the conversation so that advocacy also drives political and systemic change.”
Ilana Reinhold (Germany)
“Patients are at the heart of what we do. This working group was created to connect science with lived experience—because real progress happens when researchers, clinicians, and patients work side by side. I believe that advocacy is not an accessory to medicine, but a vital part of it.”
Laura Walti (Switzerland)
“Every patient’s journey teaches us something beyond what data can show. By listening carefully and acting on those insights, we can make fungal infections visible, improve access to care, and change outcomes. That is what drives my involvement.”
Oliver Cornely (Germany)
“Fungal diseases remain critically neglected. I pushed for creating this group because the issue is urgent, both medically and politically. It’s inspiring to see colleagues worldwide come together to ensure patients are heard—not only in care, but also in political decisions. As ISHAM President Elect, I see this as a strong step toward a more inclusive, patient-centered future.”
Terenzio Cosio (Italy)
“Knowledge should never be a barrier. I’m passionate about turning complex science into messages that patients can truly understand—and use to make informed decisions.”
Pao Yu-Chen (Taiwan)
“Stories connect people. When patients share their experiences in their own language, others find hope. I believe communication and storytelling are at the heart of meaningful advocacy.”
Links to educational information and patient advocacy
Aspergillosis Patient & Carer Support: https://aspergillosis.org/
Mycology Advocacy, Research & Education (MYCARE) Foundation: https://fightfungus.org/
Gaffi Education: https://gaffi.org/where/education/
Patient and Caregiver Education, Patient Videos – Fungus Education Hub: https://funguseducationhub.org/patient-and-caregiver-education/
Educational material including games and books for all ages (Portugese) Furg
Other resources, contacts
Mycoses Study Group: https://msgerc.org/
ECMM Excellence Centers: https://www.ecmm.info/ecmm-excellence-centers/excellence-centers/