Photo: UHH/Denstorf
26 June 2024, by Abt. 5, Team EUGLOH
Photo: Lund University, Forum Medicum
Individual rare diseases affect, by definition, a smaller group of patients than other diseases. Yet, when viewed from a public health perspective, the total number of people whose lives are impacted by rare diseases is far larger. While a single diagnosis may be rare, datasets show that several thousand different rare diseases affect millions of people across Europe. Rare diseases, particularly those that begin in childhood, affect not only the patient – but also the entire family. As researchers like Prof. Dr. Laura Inhestern have found, psychosocial consequences are often experienced by all family members of a child with a rare disease.
The study of these effects – and the overall healthcare situation and living environments of children and families in these circumstances – is Prof. Dr. Inhestern’s field of expertise and the focus of the research group she leads on rare diseases in childhood, which aims to contribute to improvements in care through research. She is an endowed junior professor in the field of health services research for rare childhood diseases at the University Medical Center Hamburg-Eppendorf (UKE). The endowed junior professorship is funded by the foundation Kindness for Kids and is based at the UKE’s Department of Medical Psychology, which contributes to the funding of the chair along with the Department of Pediatric Hematology and Oncology and the Department of Pediatrics. Prof. Dr. Inhestern also works closely with both the Center for Health Care Research and the Martin Zeitz Center for Rare Diseases at the UKE.
In additional to this robust institutional network, a strong international network is especially beneficial for advancing research in the context of rare diseases, because it allows for the inclusion of patient groups beyond national boundaries. To further this goal, Prof. Dr. Inhestern took part in a week-long research stay at Lund University in Sweden in April through the European University Alliance for Global Health (EUGLOH). The exchange was financed by a funding program from the German Academic Exchange Service (Deutscher Akademischer Austauschdienst) that provides German higher education institutions with additional financial support for use in EU-funded consortia such as EUGLOH.
“The stay was very inspiring,” said Prof. Dr. Inhestern, as part of feedback after returning to Hamburg. “The exchange with my colleagues on site was both helpful for my future work and exciting in light of the fact that similarities of research projects from my colleagues from Lund and my research group were identified.”
During her week-long stay, Prof. Dr. Inhestern had the opportunity to consolidate partnerships with researchers in Lund and plan potential future opportunities for joint research. She also was able to gain insight into international differences related to the organization of healthcare and approaches to research such as the use of large databases or registers, which are common in Sweden. Differences in population density and distribution compared to Germany were also of particular interest from a research perspective.
An ongoing exchange of ideas is already being planned. A colleague from Lund University is planning to visit Universität Hamburg in the fall, and Prof. Dr. Inhestern is planning to return to Sweden. In addition to meeting colleagues at Lund University’s new medical faculty building, known as the “Forum Medicum,” she is looking forward to having another chance to enjoy the Swedish custom of a second breakfast, or “fika,” with her international research colleagues as they exchange their ideas and experiences.
For more information on EUGLOH exchange opportunities for researchers, contact the EUGLOH team at Universität Hamburg.
