19th International Workshop on Fragile X and other Neurodevelopmental Disorders
From 19 to 22 September 2019
At : Hotel Hilton Sorrento Palace Sorrento, Italy
Events
RAREsummit19
On 24 September 2019
At : Hinxton, Cambridgeshire, England
International Summer School on Rare Disease Registries and FAIRification of Data
From 24 to 28 September 2019
At : Italy
ERS International Congress 2019
From 29 September to 03 October 2019
At : Madrid, Spain
Innovation Bootcamp in Rare Diseases
From 05 to 06 November 2019
At : Leuven, Belgium
International Primary Immunodeficiency Congress 2019
From 07 to 09 November 2019
At : Madrid, Spain
The 14th Meeting of the International Conference on Rare Diseases and Orphan Drugs
From 12 to 14 November 2019
At : Rishon Lezion, Israel.
RE(ACT) Congress 2019
From 09 to 12 November 2019
At : United States of America
10th International Prader-Willi Syndrome Organisation conference
From 14 to 18 November 2019
At : Havana, Cuba
Next ERN-EYE workshop on gene and cell therapies and retinal implants
From 22 to 23 November 2019
At : Strasbourg, France
1st Global Congress on epidermolysis bullosa
From 20 to 24 January 2020
At : London, UK
Courses and Educational Initiatives
Quality assurance, variant interpretation and data management in the NGS diagnostic era
From 24 to 26 October 2019
At : Leuven, Belgium.
Innovation Bootcamp on Rare Diseases
From 05 to 06 November 2019
At : Leuven, Belgium
The Laboratory for Thrombosis Reasearch at the University of KU Leuven is organising the second edition of the “Innovation Bootcamp on Rare Diseases” in Leuven.
The target audience includes researchers, clinicians, pharma, policy makers and patient organisations dealing with rare diseases.
The preliminary program consists of the following sessions:
1. Landscape of Rare Diseases and Orphan Drugs in 2019
2. Innovative Entrepreneurship and health economics in RD
3a. Advanced Therapy Medicinal Products
3b. Pediatric RD
4. Raising awareness in RD
5a. Oncologic RD
5b. Metabolic RD
6. Interdisciplinarity and paradigm rethinking
7. Orphan drug access and affordability issues
Registrations for this Bootcamp are open.
Job Opportunities
Web app developer
Please send your CV and cover letter to with the reference 2019-US14-004 to:
- Marc HANAUER
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
Media
TEDx Youth event talk
Sanfilippo Children's Foundation organised a powerful TEDx Youth event talk at Moriah College. It focuses on the life of two children affected by genetic disorders and how it impacts their surroundings.
Second edition of Disorder: The Rare Disease Film Festival
On November 9 and 10 in San Francisco a Rare disease festival is organised featuring films backed by rare disease advocacy organisations or pharmaceutical companies.
Marfan children’s book translated in other EU languages
Bakoumba, children’s book about Marfan syndrome, is being translated from French into various EU languages. The ambition of this project is for the book to be shared with the greatest number of Marfan syndrome patients and their families possible. It is the story of a little lion who has Marfan syndrome and who feels different until he learns, through a series of adventures, how his differences can turn out to be his greatest strength.