Fifth International Symposium on ARSACS Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)
From 01 to 02 November 2018
At : Montreal, Quebec
Events
Rare Diseases InFusion: Special Case Biotherapeutics?
06 November 2018
Venue : Berlin, Germany
9th World Orphan Drug Congress
From 07 to 09 November 2018
At : Barcelone, Espagne
Rare Voices Australia: 2018 Rare Disease Summit
From 17 to 18 November 2018
At : Melbourne, Australia
8th World Congress on Rare Diseases and Orphan Drugs
From 22 to 23 November 2018
At : Paris, France
RAREFest 2018
From 01 to 02 December 2018
At : Cambridge, UK
1st global congress on epidermolysis bullosa
From 20 to 24 January 2020
At : London, UK
Myology 2019
From 26 to 29 March 2019
At : Bordeaux, France
International Primary Immunodeficiency Congress 2019
From 07 to 09 November 2019
At : Madrid, Spain
Courses & Educational Initiatives
Second ROAD Network Winter School
From 07 to 08 December 2018
At : Paris, France
This event is dedicated to « New Progress in Osteoarticular Research : From Cell Environment to Human Ecosystem ».
Abstract submission is now open, until 14 September 2018. Registration is free but required on account of limited places.
EURORDIS Winter School 2019
From 12 to 16 March 2019
At : Imagine Institute, Paris, France
Applications are now open. Applicants will be notified of the outcome of their application by mid October.
Grants
Job Research Foundation will award several grants
The Job Research Foundation is offering grant funding for researchers who are interested in researching the causes of, and treatments for, Job Syndrome.
For the remainder of the 2018 calendar year, the Foundation will award two 2-year grants of up to $200,000 each, and two 2-year grants of up to $50,000 each to qualified grantees. Special Consideration will be given to research focused on Job Syndrome and Pulmonary complications due to Job Syndrome, and therapies to help them. It is anticipated that these grants will be available on an annual basis for new applicants. Previous applicants can apply in subsequent years to extend their research.
The submission deadline for all grant applications is 15 Novembre 2018. Grants will be awarded by 17 Decembre 2018.
International Prize for Scientific Research Arrigo Recordati 2019
The International Prize for Scientific Research Arrigo Recordati has announced the Call for Nominations for the Ninth Edition of the Award.
The 2019 €100,000 Award will be dedicated to the promotion and recognition of excellence in orphan disease treatment research.
International projects within the area of rare/orphan disease treatment in all therapeutic areas (except for oncology, hematology and immunology) are eligible to apply as long as the disease concerned has a prevalence of not more than 1 in 2000.
The 2019 Award is open to researchers of all nationalities who are not in any way directly affiliated with pharmaceutical or medical device companies.
Nominations procedure will follow a two-step selection approach:
Deadline of the preselection: 15 December 2018
Full Applications: 30 April 2019
Contacts: recordatiprize2019@recordati.com
International fund Congenital Adrenal Hyperplasia: new call for proposals
The international fund Congenital Adrenal Hyperplasia (IFCAH) is opening a call for proposals in October 2018.
IFCAH is an endowment fund created to support research dedicated to improve the lives of those living with Congenital Adrenal Hyperplasia. Over the past 8 years 112 different European proposals have been submitted.
Letters of intent are due by January 2019.
Job opportunities
VASCERN hires: IT helpdesk/end-user support and data manager
The VASCERN coordination team, located in Paris, is looking for a full-time IT helpdesk/end-user support specialist and a full-time data manager.
Read the full job descriptions (in English and French):
Job offer: VASCERN – IT HELP DESK END-USER SUPPORT SPECIALIST (EN-FR)- Sept 2018
Job offer: VASCERN Data manager (EN-FR) – Sept 2018
Document resource manager - Clinical signs
Please send your CV and cover letter to:
- Annie OLRY
- E-mail : jobs.orphanet@inserm.fr
- Tél : +33 (0)1 56 53 81 37
Project Manager Software Engineering
Please send your CV and cover letter to with the reference US14 to:
- Marc HANAUER
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 51
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
Scientific and Medical Officer of the database "Rare Diseases"
Please send your CV and cover letter to with the reference US14-2018-15 to:
- Annie OLRY
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
Political watch and OrphaNews International editor
Please send your CV and cover letter to with the reference US14-2018-16 to:
- Charlotte RODWELL
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
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
Partner Search
A call for participation for a research project on coordination of care for rare diseases
Genetic Alliance UK is part of a larger team of scholars and experts in the field of rare diseases, aiming to fill the gap in care coordination with a new study called CONCORD (COordiNated Care of Rare Diseases). The study, which began in June 2018, will last two and a half years and is funded by the National Institute of Health Research (NHRI) and the Delivery Research Program. The study is led by Professor Steve Morris, a health economist at University City London.
The first stage of this research project is currently underway. There is a call for rare disease patients and parents/caregivers of rare disease patients to participate in interviews about their experience on coordinating care.
To take part in the project or for questions: contact Amy Simpson / amy.simpson@geneticalliance.org.uk / 0207 831 0883
Media
A look back on ECRD Vienna 2018
The 9th European Conference on Rare Diseases & Orphan Products took place in Vienna from 10 to 12 May 2018. Recently, the Orphanet Journal of Rare Diseases published abstracts from the posters and speaker presentations that occurred.
Orphanet J Rare Dis. 2018 Sep 29;13(Supp 2):167
An article on Public Opinion on the ITP (idiopathic thrombocytopenic purpura) Matters Color Run
The goal of the Color Run was to educate the community on what idiopathic thrombocytopenic purpura is and how it affects people who live with this disease. A look back at the Color Run in pictures can be found on the website Public Opinion.
Mediaplanet teams up with Boston-based company BERG in a campaign for rare diseases
Mediaplanet announced launch of the September edition of “Rare Diseases”. This campaign showcases the innovative work being carried out within rare diseases research diagnostics and highlights what industry experts and patients see as potential future therapies for those living with rare diseases. Boston-based biotech company BERG supported this edition to highlight how harnessing artificial intelligence and patient biology accelerates treatments for rare diseases.
The story of 8-year-old Evie who helped scientists discover Pura syndrome
The Guardian published in September an article on the benefits of whole genome sequencing to improve diagnosis and even find treatments through the story of Evie, an 8-year old child with Pura syndrome.
A Q&A on the Share4Rare project
A new RD-Connect webinar online : Linking up all those data - why should we make data FAIR?
Interview of Commissioner for Health and Food Safety Vytenis Andriukaitis in ICT&health
EU Commissioner for Health and Food Safety gave an interview to ICT&health on the digital transformation of health and how it offers the possibility to improve the lives of all Europeans. In the interview, he shares his views on the digital transformation of health, digital health records, safety in exchanging medical data and the european budget that will allow to put all these changes in place.