The Global Orphan Drug Conference and Expo
From 25 to 27 August 2020
At : Maryland-USA
Events
World Orphan Drug Congress USA 2020
From 25 to 28 August 2020
At : Washington-USA
First-ever E3 International Summit: Educating, Empowering, and Enriching Our Community
From 26 August to 13 September 2020
At : Washington-USA
46th Annual Meeting of the European Society for Blood and Marrow Transplantation
From 31 August to 03 September 2020
At : Madrid-Spain
Share4Rare WEBINAR - Patient advocates fostering research in oncology
On 03 September 2020
At : Barcelona-Spain
European Cilia Conference 2020
From 07 to 10 October 2020
At : Cologne-Germany
ORPHANICA conference
On 17 September 2020
At : Moscow-Russia
GA4GH 8th Plenary is going virtual!
From 30 September to 01 October 2020
At : Toronto-Canada
Fragile X France International workshop for researchers & clinicians
From 09 to 10 October 2020
At : Paris-France
EJP RD Training - Quality assurance, variant interpretation and data management in the NGS diagnostic era
From 13 to 15 October 2020
At : Istanbul-Turkey
ERN CRANIO annual meeting 2020
From 14 to 15 November 2020
At : Barcelona-Spain
Translational Research Conference, Bone Marrow Failure Disorders, From the cell to the cure of the disease
From 14 to 16 November 2020
At : Paris-France
11th ERN Coordinators Group Winter Meeting
From 27 to 28 November 2020
At : Brussels-Belgium
Re(act) International Congress on Research Of Rare And Orphan Diseases postponed due to the situation associated with the COVID-19 outbreak
From 27 to 28 November 2020
At : Berlin-Germany
First European Congress on Kawasaki Disease
From 15 to 17 January 2021
At : Paris-France
Huntington's Disease Youth Organisation - 1st Young Adult Congress
From 13 to 15 March 2021
At : Glasgow-Scotland
RVA's biennial National Rare Disease Summit
From 13 to 14 November 2021
At : Sydney-Australia
Courses and educational initiatives
International Summer School on Rare Disease Registries and FAIRification of Data
The International Summer School on rare diseases registries and FAIRification of data is a 5-day training session organised by the Istituto Superiore di Sanità (ISS), in collaboration with EJP-RD and its partners (including Endo-ERN, Metab-ERN, EURORDIS, ELIXIR). Registries are key resources to improve diagnosis, patient management, the support of healthcare planning, or for the facilitation of clinical trials.
The International Summer course is composed of two training modules, firstly a three-day module (on the establishment of high quality registries, features of successful strategies, and on legal and ethical issues regarding EU General Data Protection Regulation), and secondly a two-days module on FAIRification of data. Participants will include medical and clinician specialists, database managers, registry curators, healthcare professionals, rare disease patients representatives and the international research community. A maximum of 30 participants will take part to the online International Summer course for more active participation and exchange.
EURORDIS Digital School
The EURORDIS Digital School training empowers RD patient by advocating them in their use of digital communication tools (digital landscapes, about creating empowered communities, reaching the right people, building effective channels) for the improvement of their strategic outreach and community-building capacities. A pilot session took place in 2019 in Gothenburg, and the session was converted into an online programme. Trainers are social and digital media experts, and representatives of patient organisations.
Job opportunities
Information scientist in charge of Rare Diseases and clinical signs
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
Administrative, Financial and Accounting Manager
Please send your CV and cover letter with the reference 2020-US14-005 à:
- Ana RATH
- E-mail : orphanet@inserm.fr
- Tel : +33 (0) 1 56 53 81 37
Project Manager on phenotypic similarity analysis on rare diseases
Please send your CV and cover letter with the reference 2020-US14-002 to:
- Annie OLRY
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
Responsible of the database on rare diseases epidemiology
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
ERN-EYE Scientific Project Manager
Please send your CV and cover letter to:
- Mme Marion PEYSSOU
- Email : peyssou@chru-strasbourg.fr
- Pr Hélène DOLLFUS
- E-mail: dollfus@chru-strasbourg.fr
Media
The French National Rare Disease Network
The English version of a video describing the organisation and aims of the French National Rare Diseases Network is now available. The French version was launched last year. The video is also explaining the interaction between the French Network on one side, and the Centres of Reference (RRCP), the Centres of Competence (CCMR), and the European Reference Networks (ERNs) on the other side.
Endo-ERN support to health professionals
The European Commission (Health and Food Safety General Direction), and Endo-ERN launched a video illustrating the activities and the added-value of the ERN regarding from health professionals’ point of view.
- To read more about “Read More”
Orphanet Italy
A video presenting the work of Orphanet Italy has been produced by the Orphanet Italy team.
Rare diseases awareness through Hindi Cinema
Hindi cinema is contributing to promoting awareness of rare diseases (RD) in the Indian society. Hindi cinema plays a crucial role in informing the public about RD issues and driving positive changes to society. This was confirmed following a study on six Indian movies concerning RD.