
We are looking for an enthusiastic PhD candidate for a challenging position within the Center of Expertise for Muscular Diseases. Are you a team player who wants to make a difference for people with FSHD and their families, together with our international partners? We are looking forward to meet you!
Facioscapulohumeral muscular dystrophy (FSHD) is a progressive genetic muscle disorder, causing progressive weakness in the face, shoulders, and upper arms. As individuals with FSHD age, muscle weakness extends to the trunk and legs, often leading to increasing mobility challenges. Ageing compounds the effects of FSHD, as natural muscle loss and reduced recovery capacity accelerate functional decline.
Advance Care Planning and palliative care enable patients to discuss their healthcare wishes with loved ones/healthcare professionals and to guide their care by recording their decisions. With FSHD, life expectancy is near normal, but there are significant care issues towards the end of life that are not or insufficiently addressed. There is only limited guidance available in the area of Advance Care Planning and palliative care for FSHD.
The aim of this project is to address the gap in FSHD care between routine care, advance care planning, and palliative care through multidisciplinary collaboration. Consensus recommendations will be reached and guidelines will be provided for clinicl care in later stages of life. In addition, information will be collected on mortality rates in FSHD. This research is funded by FSHD Global research Foundation and the Dutch FSHD Stichting.
Your main tasks will be to set up and conduct:
In addition to writing scientific articles, you will also present the results to a diverse audience. Results will be translated into patient-friendly resources that can support families in making informed decisions and engaging in conversations about the later stages of life. This project focuses on multidisciplinary collaboration with international researchers.
In 2027, an international workshop will be organized, which will result in recommendations for Advance Care Planning and palliative care for FSHD. In preparation for this, a workshop will be held in Australia in November 2026.
As a PhD candidate, you will be working in an enthusiastic and driven multidisciplinary team within the Center of Expertise for Muscular Diseases, part of the Neurology department. Radboudumc is a recognized center of expertise for multiple hereditary muscle diseases, providing care, research, and innovation. The Radboudumc Muscle Disease Center offers unique facilities where patients of all ages are treated by a multidisciplinary team. We are also part of the FSHD expertise center, together with Leiden University Medical Center (LUMC).
You will work closely with colleagues in the Netherlands and abroad in the fields of Advance Care Planning, palliative care, and geriatrics. You will be part of a professional and collegial team in which openness and accessible cooperation are key.
You have the ambition to obtain a PhD and:
Welcome to Radboud university medical center (Radboudumc), where our research groups strive for innovative solutions that make impact on health and healthcare. We challenge the status quo to overcome current and future health challenges. Our goal is to shape the future of healthcare for generations to come. Our focus is on prevention, sustainability, and meaningful care, which we achieve through our in-depth understanding of disease mechanisms, clinical science, public health research, medical technology and data science. Our approach is centered on breakthroughs that can truly enhance personalized healthcare and public health.
At Radboudumc, a comprehensive range of research programs provide the compass for our research efforts. Each program has a clear goal, where collaboration within and outside our organization is highly valued. We integrate care, education and research in partnership with our patients to ensure that our research programs have significant impact on health and healthcare. We invite you to join us in our mission to create a healthy future for all.
Nicol Voermans | Contact Person