Endo-ERN General Assembly 2025
From 09 to 10 May 2025
At : Copenhagen, Denmark
Events
RDI WHA side event
On 21 May 2025
At : Geneva, Switzerland (hybrid)
2025 ESPE/OSCAR Science Symposium
From 18 to 19 September 2025
At : Paris, France
GA4GH 13th Plenary
From 06 to 10 October 2025
At : Uppsala, Sweden
NORD Rare Diseases & Orphan Products Breakthrough Summit
From 20 to 21 October 2025
At : Washington DC, USA
International Primary Immunodeficiencies Congress 2025
From 05 to 07 November 2025
At : Prague, Czech Republic
Courses and Educational Initiatives
Upcoming ERN webinars
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:
- 08/05 - EURO-NMD & ERN-RND FSHD webinar series - Episode 1: "Genetic diagnosis"
- 13/05 - TransplantChild webinar on special considerations for intestinal or combined liver-intestine transplantation in infants
- 15/05 - EURO-NMD & ERN-RND FSHD webinar series - Episode 2: "International clinical care guidelines"
- 20/05 - TransplantChild webinar on liver heart axis
- 22/05 - EURO-NMD & ERN-RND FSHD webinar series - Episode 3: "Pediatric FSHD"
- 27/05 - MetabERN AOA Subnetwork webinar: Tyrosinemia type 1 from a neurometabolic perspective
- 28/05 - EURO-NMD & ERN-RND FSHD webinar series - Episode 4: "Clinical trial readiness"
- 03/06 - Endo-ERN webinar on novel monitoring tools to detect chronic over- or under treatment in children with CAH
- 10/06 - TransplantChild webinar on stem cell transplantation in paediatric AML
- 10/06 - ERKNet webinar on clinical practice recommendations on kidney management in methylmalonic acidemia
- 10/06 - TransplantChild webinar on biliary complications after paediatric liver transplantation
- 25/06 - Endo-ERN webinar on congenital combined pituitary hormone deficiency in Europe
- 08/07 - TransplantChild webinar on challenges in managing persistent ascites post-liver transplantation
- 09/09 - TransplantChild webinar on portal flow modulation in paediatric liver transplantation
- 09/09 - TransplantChild webinar on volumetric absorptive microsampling (VAMS) as a novel toul for TDM samples collection in paediatric transplant recipients
- 16/09 - TransplantChild webinar on neonatal organ donation
EpiCARE workshop on holistic care for rare and complex epilepsies
From 26 to 27 May 2025
At : Alesund, Norway
The "Beyond Seizures" working group of the ERN EpiCARE will be holding a workshop from 26-27 May on the challenges of rare and complex epilepsies beyond seizure control, promoting a more interdisciplinary approach to understanding such conditions.
TREAT-NMD SMA and DMD masterclass
From 08 to 10 July 2025
At : Prague, Czech Republic
TREAT-NMD will hold a masterclass on spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD) from 8-10 July in Prague. This training is aimed at European healthcare professionals who are involved in the diagnosis and care of these conditions, and will cover topics such as diagnosis, standards of care and emerging therapies. Those who would like to attend must apply for a spot, and accepted participants will receive funding for travel and expenses.
International Summer School on Genome Stability
From 15 to 19 July 2025
At : Montpellier, France
From 15-17 July 2025, a Summer School on genome stability will be held for masters and PhD students, and postdocs, in Montpellier. The three-day training will include expert lectures, oral presentations by participants and round table discussions. The Summer School has a limit of 30 available spots, and the deadline to apply is 1 March 2025.
Grants
AARSACS Foundation 2025 Research Call for Proposals
The Ataxia Charlevoix-Saguenay (ARSACS) Foundation has launched their 2025 Research Call for Proposals, which seeks to fund projects working to accelerate the development of treatments for ARSACS. The maximum funding amount available is $100,000 CAD, with a Seed Grant of up to $25,000 CAD, and applications can be submitted in French or English. The deadline to apply is 23 May 2025.
FDA funding opportunities for rare diseases
The FDA operates a number of programs which provide funding for rare disease research projects and organisations. A list of these programs is available here.
In addition to these programs, a list of current and open FDA rare disease funding can be found on the NIH Grants and Funding page.