Newsletter #22 - September 2018
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Do’s and Don’ts Factsheets for HTAD, MSA and HHT now available!
We are very proud to present the VASCERN Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations. These factsheets were developped in order to assist patients and the… |
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Hiring: IT Helpdesk/End-User Support & Data Manager
The VASCERN coordination team, located in Paris, France, 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… |
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VASCERN Spotlights: Professor Leo Schultze Kool
VASCERN Spotlights: Professor Leo Schultze Kool VASCERN has had a great start in its first year and I really hope that we can continue the progress and keep the enthusiasm… |
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HHT-WG’s Outcome Measures Published in the OJRD!
We are thrilled to announce the publication of European Reference Network for Rare Vascular Diseases (VASCERN) Outcome Measures For the Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Journal of Rare… |
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Grant Proposal of European Joint Programme on Rare Diseases (EJP-RD) Accepted!
The grant proposal for the European Joint Programme on Rare Diseases (EJP-RD) was accepted in August by the European Commission (see call information here)! This programme aims to develop an… |
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New Coordination Team Member!
Julia CZILIKA SZAKACS has joined the Coordination team in Paris as our new VASCERN Administrative Assistant. Julia provides administrative support to the VASCERN EU project. Before that, she was an Account… |
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Opinion on ERN of the Expert Panel in health
On 25 September 2018, the Expert Panel on Effective ways of Investing in Health will organise a Hearing on the application of the ERN model in European cross-border healthcare cooperation… |
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Aortic Disease Awareness Day
The Aortic Disease (AD) Awareness Day will take place on September 19th, 2018. This annual event aims to raise awareness of aortic diseases by the organisation of events all around… |
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New VASCERN ePAG Chair !
Following an election process organised by Eurordis this summer, Juergen GRUNERT was appointed as the new Chair of the VASCERN European Patient Advocacy Group (ePAG). Juergen Grunert is already the… |
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HHT Patient Pathway available in French
The Hereditary Haemorrhagic Telangiectasia (HHT) Patient Pathway is now available in French! Developped by the VASCERN HHT-WG, this document was kindly translated by the The French Network for Rare Multisystemic… |
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Thu20Sep2018Sat22Sep2018Stockholm, Sweden
The International Conferences on Rare Diseases and Orphan Drugs (ICORD) will hold its 13th Annual Meeting from the 20-21 September 2018 in Stockholm, Sweden.
"One aim of ICORD 2018 is to review needs that have been fulfilled and, in particular, to highlight important remaining unmet needs for patients with Rare Diseases in a global perspective."
To Register for this event click here: https://icord2018.eventsmart.com/events/icord-2018/
For more information click here: http://icord.se/upcoming-events/icord-2018-stockholm
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Mon24Sep2018
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Wed26Sep2018Sat29Sep2018Ghent, Belgium
The International Symposium of the Ehlers-Danlos Syndromes will take place in Ghent, Belgium, from the 26-29 of September 2018.
Members of our Medium-Sized Artery Working Group (MSA-WG), including Dr. Leema Robert (Chair of MSA-WG), Prof Xavier Jeunemaitre (Co-Chair of MSA-WG) and Prof Julie De Backer, will be in attendance.
For more information, click here
To register for this event, click here
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Thu11Oct2018Fri12Oct2018Paris, France
VASCERN Days 2018 (2 days annual seminar) will take place on October 11-12, 2018 in Paris, France.
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Fri26Oct20188:30AM-18:35PMBudapest, Hungary
The first Central-Eastern European Marfan Symposium, organised by our HCP Member, Prof. Zoltán Szabolcs, MD; and Dr Kálmán Benke, MD, PhD; Heart and Vascular Center, Semmelweis University, Budapest, will take place on October 26th, 2018 in Budapest, Hungary.
Prof Guillaume Jondeau, VASCERN Coordinator, will present VASCERN and the HTAD-WG at this event.
(1) European Reference Network for Vascular Diseases (VASCERN)
Prof. Guillaume Jondeau, MD; Director, Heart Failure Unit, Cardiology Department, Claude Bichat-Claude Bernard Hospital, Paris Director, Centre de référence sur le syndrome de Marfan et apparentésProf Julie De Backer, VASCERN HTAD-WG Chair, will be also in attendance and present:
(8) Marfan cardiomyopathy
Prof. Julie De Backer, MD; Centrum Medische Genetica, GentProf. Jolien Roos-Hesselink, from our HCP Member Erasmus MC, Rotterdam, HTAD-WG Member, will also be presenting:
(11) Pregnancy in Marfan syndrome
Prof. Jolien Roos-Hesselink, MD; Erasmus MC, RotterdamTo see theprogram, click here
All information and registration here
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Tue06Nov2018Thu08Nov2018Barcelona, Spain
Europe’s largest Orphan Drug Congress will be back for an 8th session from November 6-8, 2018 in Barcelona Spain. This congress allows the rare disease community a chance to discover the latest developments and technologies in the orphan drugs industry.
All information and registration on the event page here
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Wed21Nov2018Thu22Nov2018Brussels, Belgium
The 4th Conference of the European Reference Networks (ERNs) entitled "ERNs in action" will take place in Brussels, Belgium from November 21-22, 2018.
Atleast 10 representatives from VASCERN will be in attendance.
Further details TBA.
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Thu22Nov2018
