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.
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 everyone! I am Clémence Le Cornec, and I am currently working as a data scientist for ERKNet. I hold a bachelor and master degree in environmental engineering from the Swiss Federal Institute of Technology in Lausanne and a PhD in transport studies from Imperial College London. I am mainly in charge of maintaining the ERKReg registry, setting up the new subregistries, running data quality analysis and making the registry data FAIR (Findable, Accessible, Interoperable and Reusable). This is crucial to allow the efficient reuse of the collected data at a later stage (for research, policy, etc.).
Hi, I’m Iris and I joined the ERKNet team in May 2022 as Project Manager Assistant. I hold a UK university degree in Literary Studies and Journalism. Before I started at Heidelberg University Hospital as personal assistant to the Director in 2015 I worked many years as a marketing and events expert for a biotechnology company. At ERKNet I am responsible for administrative processes, general team support and conferences. Additionally, I was appointed a CPMS manager and will be happy to support our network in this field.
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.
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 Jana Heigwer. Since January 2022, I have joined the theam 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.