ESPE annual meeting 2021
From 08 to 10 May 2021
At : Liverpool-UK
Events
European congress on Sudden Infant Death Syndrome (SiDS) and Sudden Unexpected Death of Infancy (SUDi)
From 11 to 13 May 2021
At : Montpellier-France
dHealth 2021
From 12 to 13 May 2021
At : Online
13th International Epilepsy Colloquium
From 21 to 23 May 2021
At : Virtual
ECE annual meeting 2021
From 23 to 26 May 2021
At : Prague-Czech Republic
ESHG Online Conference
From 13 to 16 June 2021
At : Glasgow-Scotland
International Scientific CDG Symposium 2021
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.
Nursing, Genomics & Healthcare
From 08 to 10 July 2021
At : Online
RVA's biennial National Rare Disease Summit
From 13 to 14 November 2021
At : Sydney-Australia
The Translational Science of Rare Diseases - From Rare to Care IV
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.
Grants
EJP-RD : The Research Mobility Fellowships call
The call for Research Mobility Fellowships aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
The exchange can be carried out either:
- within the same ERN (Full Members and Affiliated Partners), OR
- between different ERNs (Full Members and Affiliated Partners), OR
- between ERN Full Members / Affiliated Partners and non-ERN institutions.
Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.
Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.
Fellows should take into consideration several elements such as:
- Relevance and impact of the project, for the fellow, home and host institutions and the ERN as a whole
- clear added value for the ERN(s)
- Quality of the research proposal
- Organization and proposed methodology of the training
- Relevance of timelines and of required resources and budget
The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.
The deadline for application is 26 April 2021.
EJP RD – Networking Support Scheme (NSS) Call
The EJP RD Networking Support Scheme (NSS) call is open.
The first aim is to encourage sharing of knowledge on rare diseases and rare cancers of health care professionals, researchers and patients. The second aim is to enable or increase the participation of usually underrepresented countries in Europe (see below) in new and existing research networks. The scheme will provide financial support to applicants to organize workshops or conferences. The focus of these workshops or conferences should be (the implications of) research results and innovative solutions in compliance with the vision set by the International Rare Diseases Research Consortium (IRDiRC) : "“enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention”.
In this Networking Support Scheme applicants can apply for a budget of a maximum of 30,000 € per event.
The collection date is March 2nd at 14:00 (CET). The next collection date will be June 1st.
French Hemophilia Association (AFH) : Call « Henri Chaigneau » 2021
In 2021, the French Hemophilia Association (AFH) has launched a call « Henri Chaigneau » for proposals aimed at supporting research into the management of haemophiliac arthropathies.
This call for proposals aims to cover all fields of research in the study of cartilage. It aims to support an innovative project on new fundamental, preclinical or clinical research strategies to prevent, preserve or repair cartilage degradation in patients with bleeding disorders.
The programme should enable progress to be made in the assessment of the articular state of patients, on the mechanisms leading to the degradation of cartilage and their prevention. It may also focus on innovative studies aimed at repairing damaged joints. The fields considered will include the fundamental aspects (molecular mechanism) of this arthropathy, in animal models or in humans, as well as clinical research, the foreseeable health applications of which will have to be specified.
Projects concerning the search for new therapeutic pathways, in particular regenerative medicine and/or cell engineering will be particularly encouraged. Research and clinical trials are currently underway in the treatment of osteoarthritis. The projects submitted should show how these new techniques could be applied to haemophilic arthropathy.
In all cases, the projects must clearly set out the expected impact and benefits for the patient.
Two types of projects may be funded: advanced projects with preliminary data or "pilot" projects dedicated to early stage but large-scale research.
The project leader should present the amount of financial support requested within a provisional budget identifying human and material resources required. The amount allocated will be determined according to the budget available at the AFH.
Depending on the project(s) selected and the results obtained, AFH financial support, through its Endowment Fund for research on hemophilia (FRH, Fonds de dotation de Recherche sur l’Hémophilie) and/or its Hemophilia Association Funds hosted by the Fondation de France, may be renewed annually, once or several times, or readjusted by the AFH Board of Directors (CA).
The application form can be downloaded from the AFH website: https://afh.asso.fr/wp-content/uploads/2021/03/Application-File.docx
The deadline for submitting applications is June 1st 2021. Applications must be sent by e-mail to the following address: genevieve.pietu@afh.asso.fr
Courses and educational initiatives
EJP-RD and the Foundation for Rare Diseases : Online courses launched on "Diagnosing Rare Diseases - from the Clinic to Research"
The European Joint Programme on Rare Diseases has launched an online academic education course on rare diseases research topics. The development of the courses is coordinated by the Foundation for Rare Diseases, one of the EJP RD partners.
The first MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” started on April 26th. This course aims to gain insight into patients’ experiences and discuss key issues relating to this topic.
It has been co-developed with representatives from ERN Ithaca (Prof Laurence Faivre, Dijon University Hospital), ERN Genturis (Dr Chrystelle Colas, Curie Institute) and Foundation for Rare Diseases (Roseline Favresse).
This course is designed for individuals with a keen interest in diagnostic research and rare diseases. While primarily designed for medical students and PhD/post-doc students in biomedical sciences, it will also be of interest to Patients Advocacy Organisations’ representatives, Healthcare professionals or paramedics who want to further their knowledge of rare diseases diagnosis.
This course will cover the following topics :
- The diagnostic process and the types of genetic tests available for rare diseases
- The differences in rare genetic diseases patient pathways
- Technological advances for diagnostic research
- The role of collaborative studies and data sharing in rare diseases diagnosis
- The impact of having or lacking a diagnosis on patients’ lives
- The role and place of physiopathology approaches as well as social sciences research in the context of rare diseases diagnosis.
The 8th Rare Diseases Summer School will be held from from 13 July to 15 July 2022 in Kartause Ittingen
Because of the pandemic covid-19, the 8th Rare Diseases Summer School has been postponed and will be held from 13 July to 15 July 2022 in Kartause Ittingen. The rare diseases summer school is part of the curriculum of the PhD programs. It aims to provide an environment for informal exchange between PhD students and experts in the field of rare disease research. The application procedure will open in 2022.
Job opportunities
EJP-RD and THEDaS project manager
Please send your CV and cover letter to:
- Ana RATH
- E-mail : jobs.orphanet@inserm.fr
- Tél : +33 (0)1 56 53 81 37
OrphaNews Editor
Please send your CV and cover letter with the reference INSERMUS14-2021-03-21-RESPONSABLE_ORPHANEWS :
- Charlotte Rodwell, Chargée de partenariats, valorisation et communication stratégique
- E-mail : jobs.orphanet@inserm.fr
- Tél : 01 56 53 81 37
VASCERN Project Manager
ERN
Please send your CV and cover letter to:
- Guillaume JONDEAU
- E-mail : guillaume.jondeau@aphp.fr
Project manager
CHU BREST
Please send your CV and cover letter to:
- Véronique KERLAN
- E-mail : veronique.kerlan@chu-brest.fr
- Tel : +33 (0) 2 98 34 71 19
Media
OneNeurology podcast series available
The OneNeurology Initiative, conceived by the European Federation of Neurological Associations (EFNA) and the European Academy of Neurology (EAN), aims to unite and strengthen neurology-related groups to stimulate collaborative advocacy, action and accountability for the prevention, treatment and management of neurological disorders worldwide.
The OneNeurology Initiative has released the One Voice for Neurology podcast, a series of seven podcasts exploring why it’s time to make neurology a global priority, how that can be achieved and what that could mean for those living with a neurological disorder.
One episode from the OneNeurology podcast series has been released each day during Brain Awareness Week 2021 from 15 March 2021 to 21 March 2021.