Hello SYNTHEMA Community!
We are delighted to bring you some exciting news from within our consortium. A group of our distinguished consortium partners have collaborated to bring forward an enlightening paper titled, “Sickle Cell Disease Landscape and Challenges in the EU: the ERN-EuroBloodNet Perspective.” This groundbreaking research aligns with the core principles of the SYNTHEMA project and advances our understanding of rare haematological diseases, especially Sickle Cell Disease.
The paper unravels the complexities of Sickle Cell Disease (SCD), a rare multiorgan hereditary disease within the European Union (EU) landscape. Stemming from the establishment of 24 European Reference Networks (ERNs) in 2017, as part of the EU’s Rare Diseases Plan, the ERN-EuroBloodNet has dedicated its efforts towards rare haematological diseases. This bold initiative has bolstered existing collaborations and cultivated new ones, opening doors for improved care for individuals suffering from these diseases.
Working closely together, 12 EU member states, including Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Portugal, Spain, Sweden, and The Netherlands, were instrumental in the creation of this comprehensive viewpoint. These countries are all members of the ERN-EuroBloodNet, fostering an international collaborative environment to combat rare health challenges.
The paper thoroughly discusses ERN-EuroBloodNet’s significant role in enhancing the overall approach and management of individuals with Sickle Cell Disease across the EU. It delves into strategies for pooling expertise, knowledge, and best practices, developing comprehensive training and education programmes, and creating systems for gathering and standardizing clinical data. It also highlights the application of this data in clinical research.
Drawing upon the strategies and insights from the ongoing implementation of the Rare Anaemia Disorders European Epidemiological Platform, the paper provides a promising outlook for epidemiology and research into rare haematological diseases. This commitment to research and development aligns closely with the objectives of the SYNTHEMA project, and this paper is a testament to that.
We invite all our esteemed members, associates, and anyone interested in the Sickle Cell Disease landscape or the broader field of rare haematological diseases, to read this insightful paper. The authors have presented a thorough and comprehensive account of the current state of Sickle Cell Disease within the EU and the endeavours underway to better manage and eventually overcome this debilitating illness.
The paper is a testament to the power of collaboration and the vital role it plays in driving forward our understanding of rare diseases. It also serves as a reflection of the SYNTHEMA project’s mission to foster collaboration, promote knowledge exchange, and push the boundaries of science.
Read more here: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(23)00182-5/fulltext
Thank you for being a part of our journey and supporting our mission. We hope you find this paper as fascinating and insightful as we do.
Keep exploring, keep learning!
Your SYNTHEMA Team.