Online Conference ERKNet Annual Meeting
From 12 to 15 May 2020
At : Heidelberg-Germany
Events
Paroxysmal dyskinesias: update on clinical and genetic aspects Webinar
On 13 May 2020
At : Milan-Italia
Online EJP RD Training Workshop- Implementing Biomedical Research Projects
From 12 to 16 May 2020
At : Graz-Austria
Online 10th European Conference on Rare Diseases & Orphan Products - ECRD 2020
From 15 to 17 May 2020
At : Stockholm-Sweden
International workshop for researchers & clinicians
From 09 to 10 October 2020
At : Paris-France
6th Congress of the European Academy of Neurology
From 24 to 27 May 2020
At : Paris-France
Virtual Conference - European Human Genetics Virtual Conference
From 07 to 10 June 2020
At : Vienna-Austria
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
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
RVA's biennial National Rare Disease Summit
From 21 to 22 November 2020
At : Sydney-Australia
Courses
8th Rare Diseases Summer School
From 16 to 18 July 2020
At : Warth-Swizerland
Grants
Fund Generet, 2020 edition
The Fund Generet, managed by the King Baudouin Foundation, and of an amount of €1,000, 000, is aimed at catalysing research on rare diseases in Belgium and beyond. For this 2020 edition, the fund will be supporting a top researcher of Belgium for the third time with outstanding scientific achievements and with a project to develop a research line in rare disease. The winner will receive twice €500, 000, and the second part will be conditioned with a positive midterm review.
Job opportunities
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
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
Media
Winners of the UK Rare Film Festival 2020
The winners of the Rare Film Festival that took place in the framework of the International Day of rare diseases were announced. The first place goes to the film « Today is a good day», produced by Aortic Dissection Awareness, a small group composed by survivors of Aortic Dissection and who decided to share their story.
Launch of the journal “Therapeutic Advances in Rare Disease”
Sage Journals launched a new journal, “Therapeutic Advances in Rare Disease”, a journal that will focus and be publishing articles on highest-quality research, clinical studies, innovative studies, and innovative development of rare diseases treatments.
Communicating Rare Diseases and Disorders in the Digital Age, a book on how to communicate on rare diseases
The book is a compilation of several chapters that focused on how to communicate on various themes concerning rare diseases, such as the story behind rare diseases and rare orphan, nine films on misdiagnosed rare diseases, the importance of communication to promote health for all in general, and rare diseases through campaigns in particular, representation in the Spanish media of patients with rare diseases, and the day-to-day life of Portuguese families with children living with a rare disease.