Final webinar on the integration of the ERNs in the Italian healthcare system
The ERN ReCONNET, MetabERN, ERN BOND, the Federation of Associations of People with Rare Diseases in Italy (Uniamo FIMR Onlus), the Italian National Institute of Health (Istituto Superiore di Sanità) and ePAG Italia are organising a final webinar on 30 November 2021 following the discussions held during the year 2021 regarding the perspectives and concrete actions to be put in place in view of the integration of ERNs in the Italian national health system. This webinar will cover the points to consider for the Italian rare diseases’ community and is intended to disease coordinators of Italian regions, patients’ associations, hospital managers, health directors, chief medical officers, Rare Disease Registry and rare disease centres managers, political representatives, pharmaceutical industries as well as general practitioners.
VASCERN: The Do’s and Don’t’s of Loeys-Dietz syndrome
The VASCERN has published a new series of Do’s and Don’ts factsheets on Loeys-Dietz syndrome. The 21 factsheets can be downloaded on the VASCERN website and are dedicated to patients with Loeys-Dietz syndrome facing common situations including pregnancy, stroke, colonoscopy, physical activity, dental work, allergies and more. Previous factsheets on the Marfan syndrome and related disorders are also available on the ERN website.
VASCERN: New study on the Marfan syndrome
A new study co-authored by the Heritable Thoracic Aortic Working Group (HTAD WG) of VASCERN has been published in the Nature Reviews Disease Primer journal. The study focuses on the Marfan syndrome and gives a complete summary of the rare vascular disease, including regarding its screening and prevention, its management and treatment as well as its consequences on patients’ quality of life. The study also includes testimonials from patients and an up-to-date list of randomised clinical trials using angiotensin II receptor blockers (ARBs).
ERKNet: Second class of the Postgraduate Curriculum in Rare Kidney Disease
The ERKNet has announced the launch of the second class of its Postgraduate Curriculum in Rare Kidney Disease. The three-year training programme (2022-2024) targets post-graduate physicians who wish to become certified European experts in rare kidney diseases. It includes a series of webinars and case-based eLearning modules. The second class will start on 15 January 2022 and registrations are open until 31 December 2021.
EpiCARE: EpiCARE joins forces with Solve-RD
The ERN EpiCARE has recently joined the Solve-RD project as an associated ERN. Solve-RD is a research and innovation project funded by the European Commission for five years (2018-2022) aimed at solving the unsolved rare diseases through novel data analysis approaches using data from thousands of unsolved rare disease patients. The ERN EpiCARE will collaborate with the consortium with regard to the re-analysis of unsolved exomes and genomes of patients with rare developmental disorders.
ERN-BOND: Launch of a new website
The ERN-BOND has launched a new website. The website presents all the information on the ERN’s missions, expertise, news and activities. The website also includes a COVID-19 section aimed at sharing indications and European initiatives related to the pandemic. Recordings of past webinars as well as information on upcoming ones are also available on this new ERN-BOND website.
ERN ITHACA: Call for collaboration on mutations in SKI gene
In order to promote clinical research and the production of cross-border collaborative work, the ERN ITHACA launched a call for collaboration to describe the long-term cardiological manifestations in patients with mutations in the SKI gene. This call for collaboration aims to identify several patients with a mutation in the SKI gene in order to clarify the cardiological phenotype of these patients over the longer term.
ERN PaedCan: Interactive Webinar Series with Young SIOPE
The ERN PaedCan and Young SIOPE- a forum for young members of the European paediatric oncology community, are holding a series of interactive webinars on the most challenging cases in paediatric oncology. The aim of these webinars is to discuss clinical cases covering different tumour types. They are equally divided between the presentation of a case by a young oncologist, followed by a live discussion with an invited expert. The next webinar will be held on 17 November 2021. The recordings of previous webinars as well as the registration links for the upcoming ones are available on the ERN PaedCan website.
ERN ReCONNET: Launch of TogethERN ReCONNET
The ERN ReCONNET has launched the TogethERN ReCONNET, a project financed by the European Commission that aims at mapping all existing Registries on rare and complex connective tissue and musculoskeletal diseases (RCTDs) across Europe. The creation of this European Registry Infrastructure will help promote a harmonised data collection approach on RCTDs in Europe and improve disease knowledge, clinical management and care provided to patients.
ERN ReCONNET: Study on COVID-19 Vaccination in Rare and Complex Connective Tissue
The ERN ReCONNET Study on COVID-19 Vaccination in Rare and Complex Connective Tissue Disease (RCTD) is still ongoing and will close on January 2022. RCTDs patients over 18 years old who received COVID-19 vaccination are invited to take part in this observational study that aims at better understanding both safety and efficacy of the vaccine in this population.
ERN TRANSPLANT-CHILD: E-learning course on the PaEdiatric Transplantation European Registry
The PaEdiatric Transplantation European Registry (PETER) e-learning course is now available on the ERN Transplant-Child Moodle platform. PETER is an open paediatric transplant registry for all type of paediatric transplantation. The course provides information on how to use the registry and includes training material, video tutorials and user manuals.
ERN TRANSPLANT-CHILD: 3rd TransplantChild Workshop
The ERN Transplant-Child is organising the third TransplantChild Workshop on 11 November 2021 under the theme "Tolerance in paediatric transplantation and transition to adulthood".
The event will be held online and will be divided in three sessions covering different aspects of novel strategies in paediatric transplantation. Registration are now open.
