25th International Week for Children with Leukemia
From 11 to 16 May 2026
At : Bursa & Istanbul, Turkey
Events
#iDR26 International Drug Repurposing Conference: Navigating the future
From 12 to 13 May 2026
At : Brussels, Belgium
RDI WHA side event: Rare diseases - A catalyst for global health transformation
On 20 May 2026
At : Geneva, Switzerland (hybrid)
ERN BOND Plenary Meeting 2026
From 28 to 29 May 2026
At : Oslo, Norway
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
ncRNA2026: From molecular mechanisms to clinical impact
From 24 to 26 June 2026
At : Leuven, Belgium
World congress on rare skin diseases
From 01 to 03 July 2026
At : Versailles, France
EuroDysmorpho 2026
From 16 to 19 September 2026
At : Pavia, Italy
GA4GH 14th Plenary
From 28 September to 02 October 2026
At : Singapore
17th International Symposium on Sjögren's Disease
From 29 September to 02 October 2026
At : Paris, France
ERN CRANIO 11th annual meeting
From 11 to 13 November 2026
At : Budapest, Hungary
Courses and Educational Initiatives
Foundation for Rare Diseases: From DNA to Cure: Gene and Gene-Modified Cell Therapies for Rare Diseases (MOOC)
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:
- 29/04 - ReCONNET webinar on steroids in relapsing polychondritis
- 06/05 - ReCONNET webinar: "2026 focus on monogenic Ehlers-Danlos syndromes: periodontal and vascular variants"
- 12/05 - TransplantChild webinar on development of multi-center consensus treatment plans for immunosuppression after pediatric liver transplant
- 13/05 - ReCONNET webinar: "CAR-T therapy in systemic lupus erythematosus (SLE): explained to the patient"
- 13/05 - EuroBloodNet Topic on Focus webinar on pediatric-specific aspects and transitions of care in inherited platelet function disorders
- 20/05 - ReCONNET webinar: "Why morning joint stiffness and swelling in rheumatic diseases?"
- 20/05 - Endo-ERN webinar on cancer therapy-related endocrine toxicities
- 27/05 - ReCONNET webinar: "Pulmonary function tests: a practical guide for rheumatologists"
- 03/06 - EuroBloodNet patient webinar on safety of CRISPR/Cas9
- 10/06 - ReCONNET webinar on how to find hidden antiphospholipid syndrome (APS)
- 16/06 - TransplantChild webinar on cardiovascular disease after paediatric SOT
- 17/06 - ReCONNET webinar: "Systemic sclerosis and pregnancy, a 2026 update"
- 24/06 - ReCONNET webinar on kidney involvement in Sjögren's disease
- 24/06 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - general aspects of diagnosis and follow-up
- 01/07 - ReCONNET webinar: "An eye on the eye in relapsing polychondritis"
- 08/07 - ReCONNET webinar on hydroxychloroquine in connective tissue diseases: benefits and controversial aspects
- 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 - ReCONNET webinar: "Fatigue in patients with myositis - beyond muscle weakness"
- 16/09 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - general aspects of treatment (platelet transfusion, rFVIIa, innovative therapies, HSCT)
- 23/09 - ReCONNET webinar on long-term outcomes of undifferentiated connective tissue disease (UCTD)
- 30/09 - ReCONNET webinar on red flags in mixed connective tissue disease (MCTD): key points at first presentation and follow-up
- 02/10 - EuroBloodNet patient webinar on regulatory path to the clinic
- 07/10 - ReCONNET webinar: "How I handle my Raynaud's phenomenon"
- 14/10 - ReCONNET webinar on the management of reproductive health and pregnancy in antiphospholipid syndrome: answers to the patient's questions
- 14/10 - EuroBloodNet Topic on Focus webinar on women with Glanzmann thrombasthenia - management of abnormal uterine bleeding and pregnancy (maternal and fetal aspects)
- 21/10 - ReCONNET webinar on gender effects on pathogenesis and clinical progression in autoimmune rheumatic connective tissue diseases
- 28/10 - ReCONNET webinar on research evidence and patient perspective on the impact of lifestyle factors in patients with Sjögren's disease
- 18/11 - ReCONNET webinar: "2026 focus on joint hypermobility: overview on pharmacological and non-pharmacological management"
- 18/11 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - management of gastrointestinal bleeding
- 02/12 - ReCONNET webinar on reproductive health in inflammatory myopathies
- 16/12 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - surgery and invasive procedures
RDI webinar "Is Traditional Health Financing Leaving Rare Diseases Behind? - Financing Gaps and Inequities in Access"
On 23 April 2026
At : Online
The EU HTA Regulation: Webinar for health technology developers of medicinal products
On 24 April 2026
At : Online
ERN-RND Spring School: Next generation sequencing diagnostics for rare neurological diseases
From 05 to 07 May 2026
At : Online
ESMO preceptorship on hereditary cancer genetics 2026
From 11 to 12 May 2026
At : Lugano, Switzerland
TREAT-NMD masterclass on adult neuromuscular diseases
From 26 to 27 June 2026
At : Amsterdam, Netherlands
ERN ITHACA introductory skeletal dysplasias course
From 29 June to 03 July 2026
At : Reggio Emilia, Italy
TREAT-NMD masterclass on FSHD
From 17 to 18 July 2026
At : Prague, Czech Republic
ERN ITHACA Dysmorphology Summer 2026
From 20 to 22 August 2026
At : Palanga, Lithuania
ESHG: 6th course in hereditary cancer genetics
From 22 to 25 September 2026
At : Bertinoro, Italy
Grants
Prix Fanny-Séléna 2026
The French Association for esophageal atresia (Association Française de l'Atrésie de l'Œsophage, AFAO) has launched the 2026 edition of their Prix Fanny-Séléna. This award aims to financially support innovative research projects with the potential to change patient lives and advance understanding of esophageal diseases. Applications for the 2026 prize will close on 21 May 2026.
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
Rare Diseases International: Chief Executive Officer
Are you looking for a meaningful opportunity to improve the lives of people living with a rare disease (PLWRD) and their families? Rare Diseases International (RDI) is looking for a Chief Executive Officer (CEO) to join their international team.
As CEO, you will drive strategic leadership, operational excellence, and sustainable impact, ensuring RDI remains the leading global voice for people living with rare conditions. You will navigate the challenges facing NGOs in today's geopolitical and economic climate, adapting the organisation's structure and funding sources to secure its long-term sustainability.
This is a fully remote position. RDI is registered as an employer in France, Spain, and Italy. A European-based CEO is preferred, but non-European applicants will be considered.
The closing date to apply is 20 May 2026 at 17:00 CEST. Please note that applications will be reviewed on a rolling basis, which may lead to an earlier closing date