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Edition of 30 April 2019

Events

RE(ACT) Congress America

From 09 to 12 May 2019

At : Toronto, Canada.

The International Congress on Research of Rare and Orphan Diseases or RE(ACT) Congress, aims to bring together scientific leaders and experts, and young scientists from a variety of breakthrough scientific fields to present cutting-edge research, and exchange ideas. Patients and patient organizations, who are committed to research, will also be in attendance to share their experiences and perspectives.

The fifth edition of the Congress will be co-organized in collaboration with the Office of Rare Diseases Research within the National Center for Advancing Translational Sciences at the National Institutes of Health, in partnership with the Canadian Organization for Rare Disorders, the Canadian Institutes of Health, Genome Canada and the Children’s Hospital of Eastern Ontario.

EURORDIS Membership Meeting 2019

From 18 to 19 May 2019

At : Bucarest, Romania

31st European Academy of Childhood Disability Conference

From 24 to 26 May 2019

At : La Cité des Sciences, Paris, France.

The American Conference on Advanced Treatments in Rare Diseases

From 14 to 15 June 2019

At : New Jersey, USA

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

Learn more

1st Global Congress on epidermolysis bullosa

From 20 to 24 January 2020

At : London, UK

Courses and Educational Initiatives

TREAT-NMD Masterclass in Duchenne muscular dystrophy

From 17 to 18 May 2019

At : Movenpick Hotel Amsterdam City Centre, the Netherlands

There is still time to apply to attend the 5th masterclass in Duchenne muscular dystrophy organised by TREAT-NMD European Reference Network which will take place at the Movenpick Hotel Amsterdam City Centre, the Netherlands, on Thursday 16th and Friday 17th May 2019.

7th radiz Rare Diseases Summer School 2019

From 11 to 13 July 2019

At : Kartause Ittingen, Warth (Canton Thurgau), Switzerland

Grants

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.

Apply

Job Opportunities

Scientific Officer within the European Virtual Research Platform for Rare Diseases

Please send your CV and cover letter to with the reference US14-2018-16 to:

Ana RATH
E-mail : jobs.orphanet@inserm.fr
Tel : +33 (0)1 56 53 81 37

Access the job description

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

Access the job description

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

Consult the complete announcement

Project Assistant - Institute of Myology