Innovation Bootcamp in Rare Diseases
From 05 to 06 November 2019
At : Leuven, Belgium
Events
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.
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
4th ISNS Middle East-North Africa Regional Meeting
From 09 to 12 March 2020
At : Limassol, Cyprus.
RE(ACT) Congress 2020
From 12 to 15 March 2020
At : Berlin, Germany.
Courses and Educational Initiatives
Clinical features of ataxia webinar by ERN-RND and ERN-EuroNMD
From 06 November to 06 October 2019
At : Nijmegen, Netherlands
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
Team leader - Orphanet Encyclopedia
Please send your CV and cover letter to with the reference 2019-US14-010 to:
- Ana Rath
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
Media
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.
Ethics and CRISPR
A book entitled Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, on the ethical considerations around CRISPR has been recently published. One chapter in particular focuses on the possible applications of CRISPR for rare diseases and the case of Huntington's disease.