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.
Note: Currently on maternity leave.
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.
Hi, my name is Alicia. I joined the ERKNet team in January 2023 as project manager. I have a health promotion and oeconomics background and I am currently finalising my master’s degree in health services research at the University of Heidelberg.
Together with Stefanie, I am in charge of network communication and management tasks. Furthermore, I will be responsible for CPMS, the Clinical Patient Management System, monitoring as well as evaluation and dissemination processes.
Hello, I have joined the ERKNet team in 2019 as patient engagement manager, liaising the ERKNet experts with our Patient Advocacy Groups (ePAGs). Moreover, I am the coordinating manager for the ERN mobility grant programme provided by the European Joint Programme on Rare Diseases (EJP RD). Also, I support the team in organising the Annual Meetings of the Network.
My background is business and marketing; I hold a Master´s degree and have longstanding experience in international advertising agencies and tourism. Until 2019 I was responsible as marketing & fundraising manager for the Hopp Children´s Cancer Center at Heidelberg University Hospital.
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.
Hello, my name is Jana Heigwer. Since January 2022, I have joined the team as part-time project manager for EJPRD fellowships. When I am not in the ERKNet office, I work as a PostDoc in the nephrology lab of Franz Schaefer at the center for pediatric and adolescent medicine in Heidelberg. There I am investigating innovative pharmacotherapeutic approaches for experimental cystic nephropathies.
I studied Molecular Biosciences in Heidelberg and completed my PhD in the cardiology department at Heidelberg University Hospital in 2017 focusing on left-right asymmetry during heart development.
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.