NORD Rare Diseases & Orphan Products Breakthrough Summit
From 25 to 27 October 2026
At : Washington DC, USA
Events
World Orphan Drug Congress Europe 2026
From 26 to 28 October 2026
At : Amsterdam, Netherlands
8th International Symposium on ARSACS
On 09 November 2026
At : Atlanta, United States
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
ERN EuroBloodNet Progress Meeting
On 12 November 2026
At : Online
Black Pearl Awards 2027
On 15 February 2027
At : Brussels (hybrid)
2nd International Clinical Care Symposium on Spinal Muscular Atrophy
From 04 to 05 March 2027
At : Prague, Czech Republic
RE(ACT) Congress 2027
From 10 to 12 March 2027
At : Budapest, Hungary
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:
- 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
- 17/11 - ERN RARE-LIVER webinar on current medical and surgical management of alveolar echinococcosis
- 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
JARDIN webinar: The role of ethics in ATMP research and development
On 02 November 2026
At : Online
The EU HTA Regulation: Webinar for health technology developers of medicinal products
On 05 November 2026
At : Online
JARDIN: Training session on how to structure patient representation in National Reference Networks
On 17 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
ERN ITHACA: Winter School on Fetal Diagnosis
On 05 December 2026
At : Paris, France
TREAT-NMD workshop series on HTA: Evidence & HTA Foundations
On 19 January 2027
At : Online
ERS/ERN-LUNG virtual school on rare lung diseases
From 20 to 21 January 2027
At : Online
ERNICA CDH & ECMO Pediatric Surgery Hands-On Course 2027
From 11 to 12 February 2027
At : Stockholm, Sweden
TREAT-NMD workshop series on HTA: Value, Pricing & Sustainability
On 16 March 2027
At : Online
TREAT-NMD workshop series on HTA: Managing Uncertainty & Policy Alignment
On 27 April 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
TREAT-NMD workshop series on HTA: From Challenges to Solutions
On 22 June 2027
At : Online
Grants
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.
FMR & GRI FRANCE : GRI-related disorders
The French Foundation for Rare Diseases, in partnership with the association GRI FRANCE, is currently accepting submissions for their call for projects on GRI-related disorders. This call seeks to support research projects from all disciplines of biomedical sciences, paramedical sciences, social sciences and/or humanities. The selected project will be eligible to receive funding of up to €20 000 over a maximum duration of 24 months. The deadline to submit a proposal is 7 January 2027 at 17h CET.
FMR & MASFD : McCune Albright syndrome/fibrous dysplasia
The French Foundation for Rare Diseases, in partnership with the association MASFD, is currently accepting submissions for their call for projects on McCune Albright syndrome/fibrous dysplasia. This call seeks to support fundamental, translational or clinical research projects. The selected project will be eligible to receive funding of up to €100 000 over a maximum duration of 24 months. The deadline to submit a proposal is 7 January 2027 at 17h CET.
FMR & AFMF : Fanconi anemia
The French Foundation for Rare Diseases, in partnership with the association AFMF, is currently accepting submissions for their call for projects on Fanconi anemia. This call seeks to support fundamental, translational or clinical research projects. The selected project will be eligible to receive funding of up to €100 000 over a maximum duration of 24 months. The deadline to submit a proposal is 7 January 2027 at 17h CET.
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.
Media
Discover ERDERA's data services!
Interested in learning about ERDERA's Data Services Hub and the other ways the consortium helps researchers and data holders handle rare disease data in a responsible way? In a new video, Ana Rath, Director of Orphanet and Data Services Co-Lead in ERDERA, talks about the importance of data for rare disease research, and the different tools available to researchers looking to enhance their use of rare disease data.