Myology 2019
From 26 to 29 March 2019
At : Bordeaux, France
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.
Duchenne Muscular Dystrophy Symposium
On 22 June 2019
At : Salzburg, Austria
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 & 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.
Grants
DEBRA All priorities Research Call
DEBRA International is inviting research proposals for the ‘All-Priorities‘ Research Call. There is a one stage application process with a submission deadline by March 11, 2019.
The ‚All-Priorities‘ Research Project grants scheme calls for research proposals across DEBRA's four priority research areas:
- Improve our understanding of the biology and genetics of all forms of EB, as better understanding can lead to new approaches to diagnose and treat EB
- Work towards the development of therapies (including possible gene-therapies, cell-therapies, drug therapies or protein therapies)
- Understand the nature of wound healing and the development of skin cancer in EB, and seek to develop better treatments and prevention strategies
- Support clinical care research to improve the management of EB through symptom relief
Funding up to €270.000 over three years
Research proposals must be submitted online.
Closing date for applications Monday, March 11, 2018 at 17:00 GMT.
Myotubular trust - 2019 call for projects (open to international applications)
Background
The Myotubular Trust (UK Registered Charity No: 1137177) was set up in 2006 to raise money for research to find a cure and / or treatment for any of the genetic forms of centronuclear and myotubular myopathy.
There are a number of genetically distinct forms of centronuclear myopathy. The commonest is x-linked, usually called myotubular myopathy, affecting in the vast majority of cases, only boys. It is also usually the most severe, presenting in the new-born period and there are associated breathing and swallowing difficulties in addition to the general muscle weakness. The other forms are either dominant or recessive in inheritance, are usually, but not always, milder, and vary widely.
2019 call for projects
Myotubular Trust is holding a 2019 call for research grants. We will require completed applications by 1700 hours GMT Friday 15th March 2019. We anticipate making awards in late June / early July.
We are looking to fund further projects that will help find a cure and / or a treatment for any form of centronuclear and myotubular myopathy (congenital X-linked recessive; congenital autosomal recessive; autosomal dominant), focusing on research that would not generally be funded by public or industrial funding sources. This call will be open to research bodies internationally.
We will be looking for the following types of application:
1. A project grant applied for by a Principal Investigator to fund a project for 2-3 years duration to be carried out by a Post-Doctoral researcher, or PHD student
2. A Myotubular Trust fellowship – basic science (3-4 years duration), where the scientist has identified a group that he or she wants to work with. Award is made to a named individual.
In particular, we would like to encourage the application of new technologies to research into centronuclear and myotubular myopathy; interventional trials; and those which may involve collaboration between different medical disciplines and / or different research institutions. We are also willing to consider applications which involve joint funding with other organisations.
Myotubular Trust’s Scientific Advisory Board (SAB) is chaired by Professor Francesco Muntoni of The Institute of Child Health, University College London. The SAB makes recommendations to the Myotubular Trust Trustees on which projects to fund, based on scientific assessment and peer review.
Further information
Further guidance and application forms can be found on the website.
Contact - research@myotubulartrust.org
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
Mission manager - Rare diseases nomenclature
Please send your CV and cover letter to with the reference US14-2018-14 to:
- Annie OLRY
- 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 movie concerning Cystic Fibrosis patients
Five Feet apart is a new movie set to be released on March 15 and directed by Justin Baldoni. The story reveolves around the life of Cystic Fibrosis patients.
Launch of Karen Boothe's new book on a woman's struggle with a rare neurological disease
Karen Boothe's new book My Walk with my Sister explores the life experience of a woman affected by a rare neurological disorder and how her condition influenced her relationship with her family.