The American Conference on Advanced Treatments in Rare Diseases
From 14 to 15 June 2019
At : New Jersey, USA
Events
3rd International Conference on Neurology and Brain Disorders
From 18 to 19 June 2019
At : Dublin, Ireland
Duchenne Muscular Dystrophy Symposium
On 22 June 2019
At : Salzburg, Austria
Monogenic Diabetes – Right Diagnosis, Right Treatment
From 02 to 03 July 2019
At : Peter Chalk Centre, University of Exeter, England
10th National Anniversary Conference for Rare Diseases and Orphan Drugs
From 14 to 15 September 2019
At : Congress Centre of International Fair Plovdiv, Bulgaria
19th International Workshop on Fragile X and other Neurodevelopmental Disorders
From 19 to 22 September 2019
At : Hotel Hilton Sorrento Palace Sorrento, Italy
International Primary Immunodeficiency Congress 2019
From 07 to 09 November 2019
At : Madrid, Spain
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
7th radiz Rare Diseases Summer School 2019
From 11 to 13 July 2019
At : Kartause Ittingen, Warth (Canton Thurgau), Switzerland
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.
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).
AISNAF Research grants
The Italian NBIA patient advocacy Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF) is currently accepting applications for research grants that will pave the way to new potential treatments for NBIA diseases. Funds were made available through contributions from AISNAF, Hoffnungsbaum e.V. (HoBa, Germany) and NBIA Disorders Association (NBIADA, USA). While AISNAF is the grant manager, all three funding organizations have equal responsibilities and rights, which includes nominating representatives to participate on the Scientific Advisory Board and Lay Review Board for each grant call.
Specifically, this is a two-track granting cycle that solicits proposals on the following diseases belonging to the NBIA current classification:
1) BPAN: Funds are available to support an 18-month research project on BPAN for up to € 65,000
2) MPAN: Funds are available to support a two-year research project on MPAN for up to € 90,000
Deadline for proposal submission: May 13, 2019
Applicants are kindly invited to visit Aisnaf website for detailed information on the grant call and application guidelines.
ARSACS research grant
Each year, the Ataxia Charlevoix-Saguenay Foundation offers annual research fellowships that will advance the understanding of the disease and lead to a treatment. A maximum of $100,000 for a period of one year with possibility of renewal for a second year. An application for a specific project could include several labs in Canada or elsewhere. In such a case, the $100,000 limit would not apply.
Deadline to send your proposal: Friday May 24,2019.
Job Opportunities
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 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