On 03 March 2021
At : online
The Endo-ERN webinar about "Molecular diagnostic testing of imprinting disorders and related growth disturbances" will be held on 2nd March, 2021 at 17:00 - 18:00 CET.
On 05 March 2021
At : Online
RDI, EURORDIS and the NGO Committee for Rare Diseases are leading a global campaign for the adoption of a UN General Assembly Resolution on persons living with a rare disease (PLWRD) and their families.
The draft Resolution calls for UN Member States to take action to protect the full human rights of PLWRD and promote the inclusion and participation in society of all people.
The RDI Rare Disease Day policy event to kick off the campaign on 4 March 2021, 14.00 CET (Paris Time).
On the agenda are messages from Permanent Representatives to the United Nations for France, the State of Qatar, Japan, Spain and Brazil. The international rare disease patient community will describe the powerful impact a UN Resolution could have on national and regional advocacy for PLWRD and their families.
On 05 March 2021
At : Online
Rare Voices Australia (RVA) organises at least one Parliamentary Event each year. This year, RVA is hosting a Parliamentary Event to mark Rare Disease Day on Thursday 4 March 2021 from 1pm-3pm (AEDT) to enable politicians to gain a better understanding and awareness about rare diseases. Parliamentary Events provide stakeholders with the opportunity to meet and speak with politicians to further highlight rare diseases. All RVA Partners are invited and the event is by invitation only.
From 13 to 15 March 2021
At : Glasgow-Scotland
On 13 April 2021
At : Milan-Italia
From 08 to 10 May 2021
At : Liverpool-UK
From 11 to 13 May 2021
At : Montpellier-France
From 12 to 13 May 2021
At : Online
From 21 to 23 May 2021
At : Virtual
From 23 to 26 May 2021
At : Prague-Czech Republic
From 13 to 16 June 2021
At : Glasgow-Scotland
From 24 to 25 June 2021
At : Online
This symposium is organized by the EUROGLYCAN-omics coordination team. The target group consists of scientists and clinicians active in research on Congenital Disorders of Glycosylation and other related disorders.
From 13 to 14 November 2021
At : Sydney-Australia
From 31 March to 02 April 2022
At : Tutzing, Germany
This event has been postponed and will now be running on the date above by Evangelische Akademie Tutzing.
From 13 to 15 April 2021
At : Online
This initiative is a part of a series of training activities included in the framework of the EJP RD, a EU funded project that counts Istituto Superiore di Sanità (ISS) among its partners. The aim of the project is to develop a sustainable ecosystem allowing a virtuous circle between rare disease care, research and medical innovation.
The training course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the research and diagnosis of rare diseases. During the training course useful instruments and tools that have been validated at international level will be illustrated to the participants through the presentation of a selected number of "use cases".
Moreover, the course will facilitate networking among professionals involved in the field of rare diseases.
The course official language is English. Registration is open to the 7 March 2021. The course programme can be found here.
A task force on shared molecular etiologies underlying multiple rare diseases has been established by the IRDiRC Interdisciplinary Scientific Committee (ISC) to adress and document the existing challenges in adapting the basket trial approach used in molecularly targeted oncology clinical trials to drugs targeting shared molecular etiologies underlying multiple rare diseases.
The objectives of the task force are to identify how previous, ongoing, and planned activities address these challenges and to provide recommendations to potential funders on how they might help accelerate this process, and thereby greatly expand the number of rare disease patients in clinical trials.
The call for experts will be open until the 1st of March 2021.
The European Joint Programme on Rare Diseases (EJP-RD) has launched an internal call on innovative statistical methodologies in clinical studies to foster and improve RD clinical studies in limited populations.
The call for innovation projects aims to develop innovative statistical methodologies to address unmet needs associated with the development and the analysis of clinical studies in limited populations.
Application should address at least one of the pre-identified (but not limited to) promising areas:
Submission of innovation projects is limited to partners from institutions beneficiaries of the EJP-RD. The proposers will be asked to submit their application the 3rd of March 2021 at: innovation.callsec@ejprarediseases.org
The goal of the Research Training Workshop, delivered as a two days event, is to train researchers and clinicians affiliated to an EJP-RD beneficiary institution or to an ERN-Full-Member or an ERN-Affiliated Partners institution in relevant topics on research in rare diseases.
Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation and aims to provide a cross-ERN added value.
The aim of this call is to identify the most suitable topics for the organization of research training workshops targeted to the ERNs. Selected research training workshops will have to train ERN researchers and clinicians in ERN relevant innovative training themes.
The successful applicant will receive the financial support to organize a 2 days workshop. The successful applicant will be supported by the WP17 coordination team. The costs for the workshop organization will be covered up to a limit of € 25.000.
The deadline for application is 7 March 2021.
The 'Network of European Funding for Neuroscience Research' (NEURON) aims to coordinate research efforts and funding programmes across Europe and beyond to promote disease-related biomedical research on neurodevelopmental disorders. NEURON particularly wishes to encourage multidisciplinary approaches and translational research proposals combining basic and clinical research that will ultimately help to develop new strategies for prevention, diagnosis, therapy, and rehabilitation
Under the umbrella of NEURON, a joint transnational call (JTC 2021) in the field of neurodevelopmental disorders is now launched together with the European Commission using the ERA-NET co-fund mechanism.
The aim of the call is to facilitate multinational, collaborative research projects that will address important translational questions relating to the neurodevelopmental nature of neurological and mental disorders. This call is limited to disorders, which show their first manifestations before the end of adolescence and impair the development and the function of the nervous system.
The ERA-Net Neuron call of for neurodevelopmental disorders is open until 9 of March.
The Ring14 International call for research grant application 2021 has been launched to solicit international research projects focused on the Ring 14 or chromosome 14 related syndromes.
The projects can be basic or pre-clinical, the ultimate goal is to find a cure for these conditions. The 2021 call for applications has been issued for one-year research project, funded with 50,000 Euros.
The call for research grant application 2021 is open until 31st March 2021.
Please send your CV and cover letter with the reference 2020-US14-002 to:
Please send your CV and cover letter with the reference 2020-US14-001 to:
• Annie OLRY
• E-mail : jobs.orphanet@inserm.fr
• Tel : +33 (0)1 56 53 81 37
EJP RD
Please send your CV and cover letter to:
ERN
Please send your CV and cover letter to:
CHU BREST
Please send your CV and cover letter to:
The Orphanet Journal of Rare Diseases is planning a slew of activities and content for Rare Disease Day, available via its homepage.
This includes a number of blog posts from prominent researchers and key opinion leaders and essays from the Findacure/M4RD “Student Voice” essay competition finalists. The winning essay from the “Student Voice” contest will be published as an article in the Journal.