GA4GH 13th Plenary
From 06 to 10 October 2025
At : Uppsala, Sweden
Events
WCA International Cancer of Unknown Primary Meeting
On 16 October 2025
At : Berlin, Germany
ESMO Congress 2025
From 17 to 21 October 2025
At : Berlin, Germany
NORD Rare Diseases & Orphan Products Breakthrough Summit
From 20 to 21 October 2025
At : Washington DC, USA
World Orphan Drug Congress Europe 2025
From 27 to 29 October 2025
At : Amsterdam, Netherlands
UDNI Conference 2025
From 28 to 31 October 2025
At : Rio de Janeiro, Brazil
Symposium on cross-border healthcare in the DE-NL border region
On 30 October 2025
At : Groningen, Netherlands
ERDERA General Assembly 2025 Open Session
On 30 October 2025
At : On line
International Primary Immunodeficiencies Congress 2025
From 05 to 07 November 2025
At : Prague, Czech Republic
ITINERARE Symposium 2025
On 18 November 2025
At : Zurich, Switzerland
2nd International Conference on Clinical Research Networks for Rare Diseases
From 09 to 10 December 2025
At : Heidelberg, Germany
8th TREAT-NMD International Conference 2026
From 10 to 12 February 2026
At : Lisbon, Portugal
EURORDIS Black Pearl Awards 2026
On 24 February 2026
At : Brussels, Belgium (hybrid)
Endo-ERN General Assembly 2026
From 20 to 21 April 2026
At : Athens, Greece
Research for Rare Symposium: The translational science of rare diseases
From 22 to 24 April 2026
At : Tutzing, Germany
13th European Conference on Rare Diseases & Orphan Products
From 02 to 04 June 2026
At : Prague, Czech Republic
17th International Symposium on Sjögren's Disease
From 29 September to 02 October 2026
At : Paris, France
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:
- 07/10 - Endo-ERN webinar on diagnosis and management of TSH resistance
- 08/10 - eUROGEN webinar on urological aspects in kidney transplantation - a focus on preoperative evaluation and postoperative management
- 14/10 - TransplantChild webinar on late vascular complications after liver transplantation
- 14/10 - ITHACA webinar on genetics and unique populations: the case of the Finnish, Roma & Irish Travellers
- 15/10 - eUROGEN webinar on anatomical and prenatal studies in anorectal malformations
- 20/10 - Endo-ERN webinar: An update on primordial dwarfism conditions
- 21/10 - ITHACA webinar on reproductive genetic carrier screening (V1)
- 22/10 - eUROGEN webinar on interstitial cystitis: multidisciplinary management of complex bladder pain syndrome
- 22/10 - Endo-ERN Italian webinar: Gestione della iperplasia surrenalica congenita nelle diverse età (CAH management across the ages)
- 29/10 - Endo-ERN webinar on the Clinical Practice recommendations for the diagnosis and management of XLH
- 29/10 - eUROGEN webinar on motility of the rectum in anorectal malformations
- 30/10 - EuroBloodNet webinar on amyloidosis
- 04/11 - Endo-ERN, ESE & ESPE joint webinar on recent therapeutic perspectives for rare endocrine diseases
- 05/11 - eUROGEN webinar on guidelines for ARM: overview and clinical impact
- 11/11 - TransplantChild webinar: Hematopoietic stem cell transplantation from alternative donors in paediatrics
- 12/11 - EuroBloodNet Topic on Focus webinar on platelet aggregation - investigating a suspected platelet function disorder
- 19/11 - eUROGEN webinar on laparoscopia extravesical ureteral reimplantation for VUR in children
- 26/11 - EuroBloodNet patient webinar on basics of gene therapy with lentiviral vectors
- 26/11 - eUROGEN webinar on TCA Hirschsprung guideline
- 02/12 - Endo-ERN Italian webinar: Aggiornamento in tema di ipopituitarismo (Update on hypopituitarism)
- 17/12 - EuroBloodNet Topic on Focus webinar on when to suspect an inherited platelet function disorder - differential diagnoses
2026 webinars
- 13/01 - TransplantChild webinar: From a protected environment to the reality of the adult world: our experience in transition after kidney transplantation
- 21/01 - eUROGEN webinar on medical device shortages and regulatory constraints
- 21/01 - EuroBloodNet Topic on Focus webinar on flow cytometry for IPFD - advantages and limits
- 28/01 - eUROGEN webinar on adrenal cysts
- 10/02 - TransplantChild webinar on experience in paediatric heart transplantation
- 11/02 - EuroBloodNet Topic on Focus webinar on genetic testing for IPFD - advantage, limitations and future perspectives for platelet dysfunction
- 16/02 - EuroBloodNet patient webinar on genome editing: CRISPR/Cas9 and sickle cell disease - how it works and its uses
- 24/02 - TransplantChild webinar on machine perfusion in paediatric liver transplantation
- 10/03 - TransplantChild webinar on experience in liver-kidney transplantation in children
- 18/03 - EuroBloodNet Topic on Focus webinar on inherited thrombocytopenias associated with platelet dysfunction - NBEAL2 and others
- 08/04 - EuroBloodNet Topic on Focus webinar on diagnostic and management of dense granule deficiency including Hermansky-Pudlak syndrome
- 15/04 - EuroBloodNet patient webinar on genome editing: CRISPR/Cas9 advanced tools and sickle cell disease - using new methods
- 14/04 - TransplantChild webinar on healing bonds: the complex experiences of paediatric sibling stem cell donors
- 12/05 - TransplantChild webinar on development of multi-center consensus treatment plans for immunosuppression after pediatric liver transplant
- 13/05 - EuroBloodNet Topic on Focus webinar on pediatric-specific aspects and transitions of care in inherited platelet function disorders
- 03/06 - EuroBloodNet patient webinar on safety of CRISPR/Cas9
- 16/06 - TransplantChild webinar on cardiovascular disease after paediatric SOT
- 24/06 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - general aspects of diagnosis and follow-up
- 17/07 - EuroBloodNet patient webinar on future developments and CRISPR/Cas9 for sickle cell disease
- 08/09 - TransplantChild webinar: Update on graft-versus-host disease in paediatrics
- 16/09 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - general aspects of treatment (platelet transfusion, rFVIIa, innovative therapies, HSCT)
- 02/10 - EuroBloodNet patient webinar on regulatory path to the clinic
- 14/10 - EuroBloodNet Topic on Focus webinar on women with Glanzmann thrombasthenia - management of abnormal uterine bleeding and pregnancy (maternal and fetal aspects)
- 18/11 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - management of gastrointestinal bleeding
- 16/12 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - surgery and invasive procedures
4th International Workshop on Klinefelter syndrome and other supernumerary sex chromosome abnormalities
From 08 to 10 October 2025
At : Padua, Italy
Endo-ERN Winter School on rare endocrine diseases
From 28 February to 03 March 2026
At : Varna, Bulgaria
Grants
ERDERA Networking Support Scheme
ERDERA has opened the first round of submissions for their new Networking Support Scheme (NSS). This continuously open call supports the organisation of transnational networking events that promote knowledge sharing, research uptake and collaborations among clinicians, researchers, and patients/patient advocacy organisations. Eligible events will have a clear rare disease or rare cancer research focus and address both aims of the call: promoting knowledge exchange and supporting greater inclusionof underrepresented countries. Funding of up to €30,000 is available per networking event.
The NSS is a permanently open call from May 2025 onwards until funds are exhausted (anticipated in April 2029). Applications will be reviewed in six-monthly collection rounds. The next collection date is 1 September 2025. More information on event eligibility and submission procedures is available on ERDERA's website.
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.
Job Opportunities
Scientific project manager - terminology alignment and rare disease data (OD4RD and JARDIN JOINT ACTION)
Orphanet is looking for a scientific project manager to work on terminology alignments and rare disease data, in the framework of the OD4RD2 and JARDIN projects. For more information, consult the job posting and to apply, send your CV and cover letter to jobs.orphanet@inserm.fr.
Scientific project manager - rare disease nomenclature and classification
Orphanet is looking for a scientific project manager to work on the nomenclature and classification of rare diseases. For more information, consult the job posting and to apply, send your CV and cover letter to jobs.orphanet@inserm.fr.