International ATP1A3 Symposium
From 25 to 26 September 2026
At : Paris, France
Events
GA4GH 14th Plenary
From 28 September to 02 October 2026
At : Singapore
RDI webinar on innovative financing for rare diseases: from concept to implementation
On 29 September 2026
At : Online
17th International Symposium on Sjögren's Disease
From 29 September to 02 October 2026
At : Paris, France
ERN-RND Annual Meeting 2026
From 08 to 10 October 2026
At : Rome, Italy
ERN-RND symposium: "Registries for RND"
On 10 October 2026
At : Online
Expert dialogue on the EU Biotech Act
On 12 October 2026
At : Brussels, Belgium
EPNS Research Meeting 2026
From 16 to 17 October 2026
At : Thessaloniki, Greece
Rare Disease Day 2027 Launch Webinar
From 19 to 20 October 2026
At : Online
NORD Rare Diseases & Orphan Products Breakthrough Summit
From 25 to 27 October 2026
At : Washington DC, USA
World Orphan Drug Congress Europe 2026
From 26 to 28 October 2026
At : Amsterdam, Netherlands
ERN CRANIO 11th annual meeting
From 11 to 13 November 2026
At : Budapest, Hungary
Research as Care: Why Rare Diseases Matter for Europe's Future
On 13 November 2026
At : Dublin, Ireland
Black Pearl Awards 2027
On 15 February 2027
At : Brussels (hybrid)
Endo-ERN General Assembly 2027
From 08 to 09 April 2027
At : Amsterdam, Netherlands
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:
- 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
- 05/10 - Endo-ERN webinar on ROHHAD syndrome - endocrine challenges in diagnosis and management
- 07/10 - ReCONNET webinar: "How I handle my Raynaud's phenomenon"
- 13/10 - Endo-ERN & ITHACA joint webinar on endorsement of guidance documents: theory and practice
- 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
- 10/11 - Endo-ERN gender dysphoria update webinar
- 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
- 24/11 - Endo-ERN webinar on inactivating PTH/PTHrP signalling disorders
- 02/12 - ReCONNET webinar on reproductive health in inflammatory myopathies
- 16/12 - EuroBloodNet Topic on Focus webinar on Glanzmann thrombasthenia - surgery and invasive procedures
EURORDIS webinar: "Leading Change: from participant to pioneer"
On 06 October 2026
At : Online
Recordati Foundation: The Ins and Outs of Newborn Screening
From 12 to 14 October 2026
At : Amsterdam, Netherlands
Recordati Foundation: Clinically Relevant Genetic Insights in Hypothalamo-Pituitary Diseases
From 15 to 17 October 2026
At : Amsterdam, Netherlands
ERN EURO-NMD Summer School on Multidisciplinary Management of NMDs
From 21 to 24 October 2026
At : Marseille, France
ERN ReCONNET Transition of care training 2026
From 22 to 24 October 2026
At : Ljubljana, Slovenia
TREAT-NMD: Expert masterclass on myotonic dystrophy type 1
On 19 November 2026
At : Online
Nephrology Course Fundació Puigvert: Update in genetic kidney diseases
From 23 to 24 November 2026
At : Barcelona, Spain
EURORDIS webinar: "Practical Advocacy: demystifying European institutions"
On 26 November 2026
At : Online
ERS/ERN-LUNG virtual school on rare lung diseases
From 20 to 21 January 2027
At : Online
EURORDIS Open Academy x ERDERA school on medicines research & development
From 07 to 10 June 2027
At : Barcelona, Spain
EURORDIS Open Academy x ERDERA school on scientific innovation & translational research
From 07 to 10 June 2027
At : Barcelona, Spain
REMEDi4ALL repurposing bootcamp for patient representatives
From 10 to 11 June 2027
At : Barcelona, Spain
Grants
IHI call 13
The Innovative Health Initiative (IHI) call 13 is officially open. This call provides funding to projects under three topics:
- Topic 1: A network to boost the next wave of European innovations in healthcare
- Topic 2: An AI foundation toxicology model and framework to support waiving a second species in drug safety studies
- Topic 3: Decode the immuno-science of age-related immune-mediated diseases
This two-stage call is open to legal entities based in all countries associated to Horizon Europe, including Canada, Switzerland, the UK, and South Korea. The deadline to submit short proposals is 8 October 2026 at 17:00 CET. Full proposals must be submitted by 21 April 2027 at 17:00 CET.
Further details on the different topics, including the budget breakdown, is available in the call text.
Find For Rare Research Grant Initiative
Find For Rare is an independently assessed, expert-led research grant initiative dedicated to improving patient care and management by providing grants to support original research projects in three lysosomal storage disorders: Fabry disease, alpha-mannosidosis, and cystinosis.
The following projects are eligible for funding:
- Projects aimed at improving understanding of the factors affecting diseases, from pathogenesis to progression
- Studies of patient tailored clinical management
Project proposals from global regions other than North, Central, and Latin America are eligible for submission. Researchers are eligible to apply for grants up to 50,000 USD to support their project.
The call for applications is open until 31 October 2026. Learn more about the eligibility criteria and application process at: https://www.findforrare.com/
Find For Rare is organised and funded by Chiesi Global Rare Diseases. This initiative reflects Chiesi Global Rare Diseases' long-term commitment to supporting progress in rare diseases by helping to build knowledge and improve care for people living with these conditions today and for generations to come.
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
Software engineer (ANGULAR)
Orphanet is recruiting an ANGULAR software developer to support our tools and interfaces, and to manage the data in our knowledgebase. For more information, consult the job posting and to apply, send your CV and cover letter to jobs.orphanet@inserm.fr.