Hello, my name is Franz Schaefer and I'm a pediatric nephrologist at Heidelberg University. I have a longstanding interest in rare kidney diseases, particularly those congenital and hereditary disorders that manifest already in childhood. I have had the chance to create several European research consortia, such as the PodoNet project for podocyte disorders, the EURenOmics consortium for high-throughput research in rare kidney diseases, and the ESCAPE Clinical Research Network that runs registries, observational studies and clinical trials in children with kidney disease. In 2017, I was asked to build up a European Reference Network for Rare Kidney DIseases, which I named ERKNet. For me, it is a pleasure and truly inspiring to see the coordination team and network members throughout Europe collaborating with contagious enthusiasm to take the care of rare kidney disease patients to a new level.
Hi, my name is Tanja. I am working as ERKNet project manager since April 2018. As a biologist, I did my PhD in the nephrology lab at the center for pediatric and adolescent medicine in Heidelberg under the supervision of Franz Schaefer. My research project was also related to rare kidney diseases and was entitled "Pharmacological interventions to improve renal function in experimental nephrotic syndrome." Having worked for six years with a mouse model for genetic steroid-resistant nephrotic syndrome, I decided to switch my attention from mice to men.
As ERKNet's administrative and operational managers, Stefanie and I handle the daily operations. I am mainly in charge of the ERKReg registry and the guideline development.
Hello, my name is Stefanie and I’m working for ERKNet as a project manager since October 2020. I studied technical biology in Stuttgart and completed my Master’s thesis on Biochemistry and Biophysics at Yale University. In 2019, I graduated from the Dermatology Department at Heidelberg University Hospital with a PhD in Immunology.
Along with Tanja, I am responsible for the main administrative and operational aspects of ERKNet. I mainly take care of the ERKucation programme, clinical exchange and app development. My passion is illustration, therefore I create graphics and flyers and keep the website and Twitter up to date.
My name is Vanessa, and I joined the great ERKNet team in June 2024 as a project manager. With an academic background that includes both health management and public health, I completed my Master's degree at Fulda University of Applied Sciences in 2023. Beyond that, I have a keen interest in health policy, medicine, environmental/global health and nutrition-related topics.
In ERKNet I lead, coordinate and manage the different projects in collaboration with the other project managers in the team. In particular, I am responsible for the CPMS, the surveys and the Clinical Exchange Programme, as well as the Hereditary and Immune Glomerulopathies and CAKUT working groups.
Hi, my name is Valentina. I joined the ERKNet team in January 2024 as a project and patient engagement manager. I have a background in biomedical research and a master’s degree in molecular biotechnology from the University of Heidelberg. Beside that, I am also very interested in political, environmental, and social issues.
At ERKNet, I am responsible for the JARDIN project, an EU-funded joint action to integrate European Reference Networks (ERNs) into national health systems. In addition, as Patient Engagement Manager, I am responsible for the involvement of Patient Advocacy Groups (ePAGs) in our network and liaising them with our ERKNet experts.
Hi, my name is Anna and I joined the team at ERKNet in September 2023 as a project assistant. I completed my apprenticeship as an office administrator in February 2023 at a company in Pforzheim. My job is to assist the team with their work in regards to contract management, administrative work, event management, procurements, invoice processing and more. In December 2023 I also took over the role of social media manager and have been managing our social media platforms ever since.
Hi! My name is Jose, and I work for ERKNet as Data Scientist. I hold a bachelor's degree in Biology from the University of Málaga, and a master’s degree in Bioinformatics from the University of Potsdam. My duties include maintaining and curating the ERKReg registry and its associated subregistries, while putting an emphasis into data interoperability. Additionally, I act as liaison for several of the European cooperation projects that ERKNet takes part in.
Hello! My name is Jonas, and I have started working as a biostatistician for ERKNet in February 2023. I hold a master degree in Statistics and Data Science from KU Leuven and both master and bachelor degrees in Psychology from the University of Konstanz. I am assisting in the maintenance of the ERKReg core registry and its subregistries and with data validation procedures. I will also be involved with the planning and implementation of statistical analyses, and I serve as a contact person for cooperating researchers who want to make use of our databases.
My name is Joanna, I try to present complicated information about rare kidney diseases in a way more understandable for everyone. Whilst working in Erknet I am preparing the patients information materials about rare kidney diseases.
I am a clinical fellow in pediatric nephrology. I studied in Gdansk, Poland and Leipzig, Germany. I have worked in pediatrics, neonatology and pediatric nephrology in Warsaw, Poland, Mainz and Darmstadt, Germany before joining the pediatric nephrology team in Heidelberg in 2018. My interests lie in rare kidney diseases, cardiovascular changes caused by kidney disease as well as pediatric hypertension, which also was the subject of my PhD.
My name is Giulia Bassanese and I am a paediatrician at the nephrology department of the University Hospital of Heidelberg. My interest in rare kidney diseases has guided my academic and professional journey, allowing me to gain experience in pediatric hospitals across Italy, the UK, and Switzerland.
Since joining Heidelberg in 2019, I have served as project manager for the ERKNet initiative, where I contributed to several projects and in particular to the creation of the ERKReg, playing an integral role in its development. In 2022, I became the project manager of the CompCure cohort study, which aims to track C3G and MPGN disease progression and improve patient access to clinical trials for new therapies. Furthermore, I am responsable for the esCapeKD project, which collects clinical data and biomaterials from children with chronic kidney disease (CKD) to support research into new risk markers for CKD progression.
Hello, I'm Johannes. I joined ERKNet in July 2024. Originally from Quito, Ecuador, I was raised in La Paz, Bolivia. I pursued my studies in Public Health in Bremen and transitioned to a Project Manager role after gaining experience in medical assistance and other health related positions. My professional journey includes years of involvement in pediatric cardiology and Long-Covid research projects in Bolivia. Alongside my management duties, I have a passion for graphic design and enjoy yoga, meditation, downhill biking and mountaineering in my free time. I am excited to be part of the outstanding ERKNet team and look forward to tackling the challenges and opportunities that lie ahead with our diverse projects.
Hey! I am Mathias and I’m working since January 2022 as a student assistent for ERKNet. I completed my bachelor's studies in mathematics (and inoffically also physics) in early 2022 and am now in the consecutive master's program. In the ERKNet team I help with the homepages and with programming tasks.
Hello, my name is Hanna and I joined the ERKNet team as a Student Assistant in October 2022. I am currently studying Medical Informatics at Heidelberg University and Heilbronn University of Applied Sciences. At ERKNet, I am involved in project management tasks as well as in development and optimization processes.
Hi my name ist Laura. I’m studying european art history and literature at the University of Heidelberg. I’m part of the CompCure Team and an assistant to Giulia.