Recognising atypical Parkinsonism Webinar
On 22 April 2020
At : Amsterdam-Holland
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
Events
Human Genome Meeting 2020
From 06 to 09 April 2020
At : Perth-Australia
Due to the coronavirus COVID-19, HGM2020 moved 100% to online mode (streaming and on demand video). Only registered delegates will access to the Human Genome Meeting 2020 online content. Delegates from all countries can register for the online content. Also discounted online rate will be applicable to participants from LMIC countries.
The EJP RD International Course Training on strategies to foster solutions of undiagnosed rare disease cases
From 28 to 30 April 2020
At : Roma-Italia
Given the current COVID-19 pandemia, some events could have been cancelled, postponed, or will be delivered in an online format. Please double-check the information on the respective websites.
Paroxysmal dyskinesias: update on clinical and genetic aspects Webinar
On 13 May 2020
At : Milan-Italia
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
ERKNet: 4th ERKNet Annual Meeting
From 14 to 15 May 2020
At : Heidelberg-Germany
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
The 10th European Conference on Rare Diseases & Orphan Products
From 16 to 17 May 2020
At : Stockholm-Sweden
Given the current COVID-19 pandemia, some events could have been cancelled, postponed, or will be delivered in an online format. Please double-check the information on the respective websites.
6th Congress of the European Academy of Neurology
From 24 to 27 May 2020
At : Paris-France
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
2020 International Usher Info Scientific Symposium
From 27 to 28 June 2020
At : Paris-France
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
RVA's biennial National Rare Disease Summit
From 21 to 22 November 2020
At : Sydney-Australia
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
Courses
8th Rare Diseases Summer School
From 16 to 18 July 2020
At : Warth-Suizerland
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
Radboud International Summer School: "The Ins and Outs of Kidneys from Physiomics to Transplantation"
From 07 to 11 July 2020
At : Nijmegen-The Netherlands
Given the current COVID-19 pandemia, some events could have been cancelled or postponed. Please double-check the information on the respective websites.
Diagnostic algorithm for childhood onset chorea Webinar
On 14 October 2020
At : Barcelona-Spain
Inherited disorders of glucose homeostasis (controversies in hypoglycaemia)
From 15 to 17 October 2020
At : Manchester-United Kingdom
Drug development for rare diseases: where are we now, how did we get here and where do we want to be? Lessons learned from teaching lysosomal storage disorders
From 13 to 15 November 2020
At : Amsterdam-The Netherlands
Media
We are visible: A documentary on Ehlers-Danlos syndrome
“We are visible” is a documentary by Karina Ulrike Sturm. The film gives a voice and space to people living with rare diseases disabilities, specifically Ehlers-Danlos syndrome. The documentary raises challenges for rare diseases patients on a daily basis, such as misconceptions and the feeling of living with invisible disabilities. It also highlights their resilience, success and strength.
A book on rare diseases networking in Brazil
The book titled “Communicating Rare Diseases and Disorders in the Digital Age” talks about the emergence of a social movement on rare diseases since 1980’s in many countries, and in 2000 in Brazil, with the enactment of National Policy on rare diseases in the country. The book also focuses on spreading information on rare diseases via social media in Brazil, and their use by patients’ organisations.
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