On 29 February 2024
At : Worldwide
On 29 February 2024, organisations around the world will organise events to bring together members of their local rare disease communities. To find specific events near you, visit the "Find Events Near You" tab on the Rare Disease Day website.
On 01 March 2024
At : Online
From 06 to 07 March 2024
At : Barcelona, Spain
On 07 March 2024
At : Online
From 19 to 20 March 2024
At : Hybrid
From 23 to 24 April 2024
At : Milan, Italy
From 29 April to 01 May 2024
At : Philadelphia, USA
From 15 to 17 May 2024
At : Brussels, Belgium (hybrid)
From 16 to 19 May 2024
At : Beach Rotana, Abu Dhabi, UAE
From 27 to 28 May 2024
At : Bari, Italy (hybrid)
From 31 May to 01 June 2024
At : Berlin, Germany
From 01 to 04 June 2024
At : Berlin, Germany (hybrid)
From 01 to 04 June 2024
At : Berlin, Germany
From 07 to 08 June 2024
At : Los Angeles, USA
On 08 June 2024
At : Los Angeles, USA
From 12 to 14 June 2024
At : Paris, France
From 26 to 28 September 2024
At : Kansas City, Missouri, USA
From 26-28 September 2024, Global Genes will be holding their annual Week in RARE, featuring the RARE Health Equity Forum and RARE Advocacy Summit.
In preparation for the event, Global Genes has issued a call for special interest session proposals. Submissions are welcome for both traditional presentations and panel discussions. Learn more here.
From 05 to 07 November 2025
At : Prague, Czech Republic
The European Reference Networks often organise educational webinars and other online meetings for their members and/or other interested parties. Below is a list of some upcoming events that may be of interest to our readers:
The EJP-RD is holding workshops aiming at training ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. These 2-days ERN workshops are open to interested persons (clinicians/scientists) affiliated to ERNs or Affiliated Partner Institutions.
Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Topics have to be proposed by the ERNs or by investigators belonging to EJP RD beneficiary institutions. Registrations are now open for several workshops.
The Solve-RD project is using the remaining time of the project to organise a series of “solvathons” – data analysis and interpretation workshops on different topics. Each workshop focuses on analysing a different type of data, with the goal of resolving undiagnosed cases of rare diseases. The remaining solvathons are:
More information about the workshops is available on Solve-RD’s website.
The University of Oulu, Finalnd, is accepting applications to their new postdoctoral program Data4Healthcare. Co-funded by the Marie-Sklodowska-Curie-Action (MSCA) COFUND of Horizon Europe, the Programme will train 25 postdoctoral researchers to better exploit and develop the possibilities of big data in the EU and globally. The first recruitment call opened last month, and will close on 15 March 2024. A second call will open in January 2025.
From 04 to 05 April 2024
At : Lisbon, Portugal
From 4-5 April, 2024, the ERN ITHACA is organising the annual European workshop on the multifaceted care and research of genetic neurodevelopmental disorders (EuroNDD). The two-day workshop is organised around six themes, covering areas relevant to clinical care, pre-clinical research, and social aspects of disease. Through a series of lectures, presentations, and round tables, the workshop will facilitate exchanges between members of various disciplines in order to disseminate knowledge about basic and translational research involving patients with neurodevelopmental disorders.
Participation in EuroNDD is free of charge, however registration is required due to a limited number of available spaces. The call for abstracts runs until 30th November, and registration is open until 22nd December.
From 17 to 19 April 2024
At : Online
From 17-19 April 2024, the ERN-RND will be holding their annual Spring School with a focus on Deep Brain Stimulation in Dystonia. Registration is not open yet, but a preliminary programme has been made available giving an idea of the topics which will be covered during the workshop. For more information, visit the network's website or contact Christine Diaite-Hecht (Christine.Diaite-Hecht@med.uni-tuebingen.de).
From 27 to 28 June 2024
At : Hanover, Germany
From 27-28 June 2024, the ERN RARE-LIVER will be holding their 5th annual workshop on research in autoimmune hepatitis in Hanover, Germany. The two-day event will feature updates on ongoing clinical project, diagnostic and predictive improvements, and the understanding of AIH pathogenesis, as well as keynote lectures and a workshop on data curation and AI approaches. During registration, participants are asked to specify whether they would like to propose a new project, present an update on an ongoing project, or present preliminary research data. The workshop preceeds the 20th HepNet Symposium at Hanover Medical School, a national symposium with special sessions in English which may be of interest to participants.
The Medical Research Future Fund has several grant opportunities open for submissions which are relevant to rare diseases. These opportunities may be of particular interest to teams based in Australia. They are:
The EU Joint Programme - Neurodegenerative Disease Research (JPND) has issued a transnational call for mechanisms and measurement of disease progression in the early phase of neurodegenerative diseases. Proposals may be submitted by research groups working in universities or other higher education institutions, public or private research organisations, hospitals and other health/social care settings, or commercial companies. Each proposal must involve 3-6 partners from at least three participating countries, and must focus on one or several of a list of neurodegenerative diseases, including rare disorders such as prion diseases and Huntington's disease. The total funding available for the call is approximately 18 million euros. Pre-proposals must be submitted no later than 12:00 CET on 5 March 2024. A full list of applicable disorders and participating countries is available on the call's webpage.
The European Partnership for Personalised Medicine (EP PerMed) has launched a joint transnational call for proposals on "Identification or Validation of Targets for Personalised Medicine Approaches (PMTargets)." Each applying consortium must involve at least three partners from three different participating countries. Projects from all disease areas are eligible. The total available budget for the call is over 45 million euros. The deadline to submit pre-proposals is 5 March 2024 at 17:00 CET. A full list of participating countries is available on the call's webpage.
The French National Research Agency (Agence nationale de la recherche, ANR) has launched itts 18th Franco-German call for proposals in Social Sciences and Humanities (SSH), in colaboration with the Deutsche Forschungsgemeinschaft (DFG). This call aims to fund research projects involving at least one French and one German team, and is open to all research areas within the SSH. Research projects do not have to relate to Franco-German objects and/or field research. Proposals must be submitted in parallel to both the ANR and DFG by 6 March 2024 at 13:00 CET.
The Fondation Maladies Rares and association Bardet-Biedl France (BBS France) have formed a partnership to support and stimulate biomedical research on pigmentary retinopathy for the improvement of Bardet-Biedl syndrome (BBS). All biomedical disciplines are eligible. Projects must explicitly formulate a research question addressing issues specifically related to pigmentary retinopathy, and must demonstrate their novelty, feasibility, and the expertise of the researcher(s) involved. Financial support up to 90,000 euros is available over a maximum duration of 24 months. Proposals must be submitted by 4 April 2024 at 5pm CET.
The Innovative Health Initiative (IHI) has announced the launch of IHI call 6 and IHI call 7.
Call 6 is a two-stage call for proposals with the following topics:
The initial submission deadline for call 6 is 16 April 2024 at 17:00 CET.
Call 7 is a single-stage call for proposals with the following topics:
The deadline for call 7 is 22 May 2024 at 17:00 CET.
Curious about the intersections of gender equity, working in STEM, and living with a rare disease? For this year's Women and Girls in Science Day (11 February), Screen4Care sat down with Ina Baumann to discuss the reality of studying medicine as a woman living with a rare disease. Baumann is a medical student at Münster University in Germany who was diagnosed with ichthyosis shortly after birth. The interview delves into her passion for medicine, persisting gender biases, and the importance of building healthy habits and a supportive community on the journey towards empowerment. Read the full interview here.
