Nominations for the EURORDIS Black Pearl Awards 2027 are open until Friday, 4 September 2026!
The Awards recognise the outstanding efforts of individuals, organisations, companies, researchers, scientists, media, and policy makers in bringing about change to improve the lives of the 30 million people in Europe and 300 million worldwide living with a rare disease. See the ink below for all the categories and how to nominate!
The TREAT-NMD network is seeking community feedback as they explore the feasibility of a dedicated neuromuscular technology expo. Such an event would bring together organisations developing technologies, products, and services designed to support people living with a neuromuscular disorder. In order to assess the demand for and potential scope of this initiative, TREAT-NMD is inviting interested parties to complete a short questionnaire to determine the value such an event could offer stakeholders.
On 27 August 2026
At : Munich, Germany
On 10 September 2026
At : Zurich, Switzerland
From 16 to 19 September 2026
At : Pavia, Italy
From 24 to 25 September 2026
At : Bonn, Germany
From 25 to 26 September 2026
At : Paris, France
From 25 to 27 October 2026
At : Washington DC, USA
From 28 September to 02 October 2026
At : Singapore
From 29 September to 02 October 2026
At : Paris, France
From 16 to 17 October 2026
At : Thessaloniki, Greece
From 11 to 13 November 2026
At : Budapest, Hungary
From 08 to 09 April 2027
At : Amsterdam, Netherlands
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:
From 20 to 22 August 2026
At : Palanga, Lithuania
On 14 September 2026
At : Washington DC, USA
From 22 to 25 September 2026
At : Bertinoro, Italy
From 12 to 14 October 2026
At : Amsterdam, Netherlands
From 15 to 17 October 2026
At : Amsterdam, Netherlands
From 21 to 24 October 2026
At : Marseille, France
On 19 November 2026
At : Online
From 23 to 24 November 2026
At : Barcelona, Spain
Only Project is proud to launch the Pioneers Grant, a new initiative designed to accelerate groundbreaking research and clinical developments in Duchenne muscular dystrophy (DMD). The grant aims in particular to support high-risk, high reward projects that have the potential to transform patient care. Recipient projects will receive funding between 500,000-2 million euros, typically over a period of 2 years. While the primary focus remains on DMD, the grant is also open to research on other neuromuscular diseases that could provide valuable insights into DMD and drive innovative therapeutic approaches. Both early-stage discoveries and clinical developments are eligible.
Applications for the Pioneers 2026 funding round are now open. The deadline to submit a proposal is 15 August 2026. For more information, follow the link below.
ERDERA has launched their 2026 Clinical Trial Call, which aims to support multi-national, sponsor-led, GCP-compliant Phase I/II interventional clinical trials on rare diseases. The call specifically targets areas of high unmeet medical need where centrally coordinated, multinational funding offers a decisive advantage over individual national efforts.
This is a multi-stage call, with a mandatory preliminary notification stage for all applicants intending to submit a proposal. The deadline for this expression of interest is 10 September 2026. More details on eligibility criteria, timelines, and budget requirements can be found at the link below.
The Innovative Health Initiative (IHI) call 13 is officially open. This call provides funding to projects under three topics:
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 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:
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 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.
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.
Orphanet is hiring a Coordinator for the databases of specialised rare disease services and of patient services in France. For more information consult the job posting and to apply, send your CV and cover letter to jobs.orphanet@inserm.fr
Orphanet is hiring a Scientific project manager "Rare disease nomenclature and scientific writing." For more information consult the job posting and to apply, send your CV and cover letter to jobs.orphanet@inserm.fr
Orphanet is hiring a part-time (50%) Medical translator. For more information consult the job posting and to apply, send your CV and cover letter to jobs.orphanet@inserm.fr