April: Fabry Awareness Month
From 02 April to 01 May 2019
At : United States, Australia
Events
International Pompe Day
On 16 April 2019
At : Worldwide
SWAN UK's Undiagnosed Children’s Awareness Day
On 27 April 2019
At : United Kingdom
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.
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
International Primary Immunodeficiency Congress 2019
From 07 to 09 November 2019
At : Madrid, Spain
1st Global Congress on epidermolysis bullosa
From 20 to 24 January 2020
At : London, UK
Courses and Educational Initiatives
Next EURO-NMD webinar announced
Our next webinar is scheduled for Thursday 18th April 2019 and is entitled Amyloid Neuropathies: update in 2019 and will be delivered by Pr David Adams from the Neurologist Bicêtre in Paris.
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.
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
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
Media
New VASCERN Pills of knowledge videos
The VASCERN just released 13 "Pills of knowledge" videos which are 2 to 5 minutes single videos where an expert talks about a specific topic that has been selected and validated by the Rare Disease Working Groups. They are educative eLearning tools and target a wide variety of viewers ranging from healthcare professionals and patients to the general public.
- To read more about “Watch the videos”