The French Foundation for Rare Diseases is delighted to announce the upcoming opening of a new facilitation window of the MOOC “Diagnosis Rare Diseases: from the clinic to research and back” on September 19th. This update will be available until December 3rd 2022. During this period, expert mentors will be actively present on the platform to answer the…
Rare Diseases International is delighted to announce their upcoming webinar on the use of the International Classification of Diseases 11th Revision (ICD -11) for rare diseases, which will take place on September 27th, at 14.00 CET. The webinar will be co-hosted by RDI and the World Health Organization. The ICD is developed and updated by the…
The Agence Nationale de la Recherche is happy to announce their upcoming ICPerMed Conference, titled « Prelude to the Future of Medicine ». The two-day conference will be held on October 5th and 6th in Paris, France. The conference will provide insight into what the future of medicine will look like by presenting concrete examples of personalised…
ERN eUROGEN is happy to announce their upcoming webinar, titled « Proximal Hypospadias: Challenges in Surgical Management ». Surgical management of proximal hypospadias is associated with major challenges regarding the establishment of a clear and effective strategy in order to optimize the functional and cosmetic outcome, reduce morbidity due to repeat interventions and minimize postoperative complications. This…
The ERN Research Training Workshops funding opportunity is now open for applications until October 1st. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be…
EJP RD is glad to announce that the last call for Research Mobility Fellowships will open on October, 3rd, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. The exchange can be carried out (1) within the same…
EURORDIS is pleased to announce that nominations for the EURORDIS Black Pearl Awards are now open until September, 4th 2022. The Awards are presented to patient advocates and organisations, policy makers, scientists, companies, and media in recognition of their exceptional achievements and outstanding commitment to the rare disease cause. NOMINATIONS: Just like every year, nominations can be submitted for any individual, organisation or company (including yourself…
IRDiRC is proud to announce that, as one of the outcomes of the MedTech for Rare Diseases Working Group led by IRDiRC members Anneliene Jonker and Marc Dooms, the Orphanet Journal of Rare Diseases has decided to focus a thematic issue on the questions regarding the research and development of orphan devices and medical technologies that…
The EJP RD « Bring Your Own Omics Data » Workshop is now open. The 2-day workshop will take place on November 17th and 18th 2022, face to face in Nijmegen (Netherlands). Costs for travel and accommodation might be available for participants from ERNs and EJP RD beneficiaries. The « Bring Your Own Omics Data » (BYOOD) Workshop aims to help with optimising and integrating…
The EJP RD is proud to announce that the Smart Guidance tool for the FAIRification of rare disease registries was released on July 18th. The questionnaire-based Smart Guidance tool is built on the Data Stewardship Wizard; it will guide users (e.g., data stewards) through the process of making their registry more FAIR. It covers various…