Endo-ERN Registries Symposium
From 23 to 24 April 2024
At : Milan, Italy
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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 23 to 25 May 2024
At : Shanghai, China
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 18 to 21 September 2024
At : Ljubljana, Slovenia
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 EJP RD recently lauched a new intermediate courses series on statistical methods for rare diseases clinical trials. The following courses are already available on EJP RD's YouTube channel on the following topics:
Stay tuned for the release of the remaining four installments in the series!
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.
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 11 to 12 April 2024
At : Florence, Italy
Thanks to an educational grant by the EJP RD, the Paediatric Rheumatology European Association (PReS) is organising its first course on Non-Infectious Childhood Chronic Uveitis (NCCU), to take place in Florence, Italy from 11-12 April 2024. The objective of the course is to improve participants' knowledge on NCCU, with a focus on diagnosis, clinical management and treatment. More information is available here.
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 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.
The Ataxia Charlevoix-Saguenay Foundation has opened their annual call for proposals on ARSACS research. The purpose of these grants is to encourage and accelerate the development of a treatment for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS). Both fundamental and clinical research projects are accepted.
Funding is available as grants of up to $100,000 CAN for a 12-month period, and with the possibility of renewal. An additional Seed Grant of $25,000 is available for projects who have not previously received funding from the Foundation.
Initial applications must be submitted by 24th May 2024, with successful applicants being informed in August. More information is available here.
Orphanet is hiring for an Administrative management assistant. The job listing is available here.
If interested, please send your CV and cover letter to jobs.orphanet@inserm.fr.
Orphanet is looking to hire a Web developer - Python. The job listing is available here.
If interested, please send your CV and cover letter to jobs.orphanet@inserm.fr.
Orphanet is looking to hire a Scientific monitoring and content acquisition officer. The job listing is available here.
If interested, please send your CV and cover letter to jobs.orphanet@inserm.fr.
A new episode of Rare on Air, EURORDIS' podcast dedicated to rare diseases, is available now. In this episode, host Jullien Poulain and Virginie Duigou, President of Neuro IFF France, discuss the impact of ultra-rare conditions such as Fatal Familial Insomnia.
A column was recently published in the online publication Clinical Leader, discussing the intersections of systemic discrimination and racism with rare disease research. Clinical trials in all areas face problems of diversity in their study populations, however this challenge is exacerbated in the case of rare diseases. In this column, Jenifer Ngo Waldrop, executive director of the Rare Disease Diversity Coalition (RDDC), discusses the all-too-common reality faced by patients of colour with rare diseases, and what paths forward exist for a more inclusive and diverse rare disease research landscape.