Monogenic Diabetes – Right Diagnosis, Right Treatment
From 01 to 02 July 2019
At : Peter Chalk Centre, University of Exeter, England
Events
10th National Anniversary Conference for Rare Diseases and Orphan Drugs
From 13 to 14 September 2019
At : Congress Centre of International Fair Plovdiv, Bulgaria
19th International Workshop on Fragile X and other Neurodevelopmental Disorders
From 18 to 21 September 2019
At : Hotel Hilton Sorrento Palace Sorrento, Italy
ERS International Congress 2019
From 28 September to 02 October 2019
At : Madrid, Spain
Innovation Bootcamp in Rare Diseases
From 04 to 05 November 2019
At : Leuven, Belgium
International Primary Immunodeficiency Congress 2019
From 06 to 08 November 2019
At : Madrid, Spain
10th International Prader-Willi Syndrome Organisation conference
From 13 to 17 November 2019
At : Havana, Cuba
Next ERN-EYE workshop on gene and cell therapies and retinal implants
From 21 to 22 November 2019
At : Strasbourg, France
1st Global Congress on epidermolysis bullosa
From 19 to 23 January 2020
At : London, UK
Courses and Educational Initiatives
Grants
Call of proposals 2019 The Associazione Gruppo Famiglie Dravet, Italy
The Associazione Gruppo Famiglie Dravet (GFD), Italy is dedicated to support the highest quality basic or clinical research on Dravet syndrome (DS). In pursuing its objective, this year, GFD will select and support research projects aimed at understanding the pathogenesis of Dravet syndrome and at paving the way to new treatments that will ultimately lead to better quality of life for people with DS. Funds were made available thanks to contributions from the GFD and the Swiss Dravet Syndrome Association (SDSA).
Rare as One - Chan Zuckergerg Foundation
Patient organisations can apply for a two-year grant opportunity to provide them assistance in launching and developing a research network within their area of expertise. In total the project aims to help 10 patient organisations by offering training, capacity-building and community mentorship services.
The Rare As One programme will accept Letters of Interests until 5 p.m. Pacific time on Tuesday, 23 July 2019.
For any additional information contact: rareasone@chanzuckerberg.com.
Job Opportunities
Scientific coordinator for the European virtual research platform
Please send your CV and cover letter to with the reference DR6-US14/017-2018 to:
- Ana Rath
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
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
Coordinator - Expert Services Directory
Please send your CV and cover letter to with the reference 2019-US14-002 to:
- Ana RATH
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
Project and data manager on phenotypic data
Please send your CV and cover letter to with the reference US14-2019-SOLVE-RD to:
- Annie Olry
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
Project Manager - The Institute of Myology
Located in Paris at the heart of the largest European hospital, Pitié-Salpêtrière, the Institute of Myology was created in 1996 by AFM-Telethon, a patient’s organization. Its goal: Promote Myology and have it accepted as a standalone clinical and scientific discipline. The Institute of Myology coordinates, around the patient, medical care, basic research, applied research, clinical research and teaching.
This fixed term contract, based at the Institute of Myology (Hôpital Pitié Salpêtrière, Paris 13) is to be filled on a full-time basis.
For further details consult the Myology website.
Thank you to send your application (CV + motivation letter) to the following address: recrutement-aim@institut-myologie.org
Project Assistant - Institute of Myology
Located in Paris at the heart of the largest European hospital, Pitié-Salpêtrière, the Institute of Myology was created in 1996 by AFM-Telethon, a patient’s organization. Its goal: Promote Myology and have it accepted as a standalone clinical and scientific discipline. The Institute of Myology coordinates, around the patient, medical care, basic research, applied research, clinical research and teaching.
This fixed term contract, based at the Institute of Myology (Hôpital Pitié Salpêtrière, Paris 13) is to be filled on a full-time basis.
For further details consult the Myology website.
Thank you to send your application (CV + motivation letter) to the following address: recrutement-aim@institut-myologie.org