VASCERN Newsletter #31 - July-August 2019
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NEWS
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VASCERN at the European Society of Cardiology Congress in Paris!
The 2019 European Society of Cardiology (ESC) Congress took place from August 31-September 4, 2019 in Paris France, and VASCERN member turnout was high, particularly from the Heritable Thoracic Aortic…
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Research News: Hereditary Hemorrhagic Telangiectasia WG publication on the safety of direct oral anticoagulants in the OJRD
The Hereditary Hemorrhagic Telangiectasia Working Group (HHT WG) has just published an article entitled Safety of direct oral anticoagulants in patients with hereditary hemorrhagic telangiectasia in the Orphanet Journal of…
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VASCERN leaflet now available!
We are very proud to release the new VASCERN information leaflet! This leaflet contains a concise overview of our network, including the presentation of our five Rare Disease Working Groups,…
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Welcome to VASCERN’s new Project Assistant
We would like to extend a warm welcome to our new Project Assistant: Anne-Marie Defo. Anne-Marie joined us at the end of August, replacing our previous Project Assistant, Aurélie Collomb.…
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FAVA-Multi videos on Pediatric and Primary Lymphedema now with English subtitles
The French network on rare multisystemic vascular diseases (FAVA-Multi) has released a series of tutorial videos for children with Pediatric and Primary Lymphedema (PPL). These videos were filmed during a…
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New VASCERN Affiliated Partner from Spain!
With the bilateral cooperation agreement signed, VASCERN has its first official Affiliated Partner: Hospital Universitari Vall d’Hebron from Barcelona, Spain! This Spanish Healthcare Provider, which is an Associated National Centre,…
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Research News: dedicated page now on VASCERN website
Each month we aim to publish an article presenting a new collaborative scientific publication by our network. These articles, along with any other research-related pieces featured in our monthly newsletter,…
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Severe/Rare Infantile Hemangioma Patient Pathway now available in German, Italian and Spanish!
The Vascular Anomales Working Group (VASCA WG)'s first patient pathway, Severe/Rare Infantile Hemangioma, has now been translated into three new languages: German Italian Spanish We thank the Healthcare professionals from…
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A new article with an Interview of Daria Julkowska, European Joint Programme on Rare Diseases (EJP-RD) coordinator
A new article has been published in ALS New Today that talks about the European Joint Programme on Rare Diseases (EJP RD), established in January 2019, with its coordinator Daria…
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Tackling rare diseases a ‘European success story’, states CEO of Eurordis Yann Le Cam
During the event « Equal access to care for rare diseases » organised by Friends of Europe (a leading Brussels-based think tank), that took place in Brussels on June 26, 2019, Eurordis'…
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UP-COMING EVENTS
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10:00- 11:00Zoom
VASCERN Monthly ePAG monthly meeting
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London
The Pediatric and Primary Lymphedema WG (PPL WG) face-to-face meeting will take place on September 12-13th, 2019 in London. It will be lead by Dr Malou Van Zanten (PPL WG member from HCP St Georges).
Members of PPL-WG are invited to a dinner on the evening of September 12.
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Gdansk, Poland
The EJP RD General Assembly will take place from September 17-19, 2019 in Gdansk, Poland.
Professor Guillaume Jondeau will attend this meeting to represent VASCERN.
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15:45- 17:00webex
VASCA Working group monthly meeting
Webex from 3:45 pm to 5 pm
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Drammen, Norway
The 2019 Marfan Europe meeting will take place on 19-22 September 2019 in Drammen, Norway.
More information here
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Fort Lauderdale, Florida
The Cure HHT Patient & Physician Conference will take place from September 21-22, 2019 at the Fort Lauderdale Marriott Pompano Beach Resort & Spa 1200 North Ocean Blvd. Pompano Beach, Florida 33062 USA.
For more information, click here
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Istituto Superiore di Sanità, Rome, Italy
The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).
For more informations : click here
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The European Biotech Week celebrates biotechnology, an innovative and vibrant sector launched by the discovery of the DNA molecule back in 1953. The first European Biotech Week that took place in 2013 marked the 60th anniversary of this pivotal moment in history.
To have more information : click here
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Brussels
The conference will highlight the results of the current and previous EU Health Programmes and present the new approach in the future Multiannual Financial Framework for 2021-2027.
For more information, click here
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Radisson Blu Royal Hotel
VASCERN's annual seminar, VASCERN Days 2019, will take place from Novembre 7-8, 2019 in Brussels Belgium!
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Glaziers Hall, London Bridge, London UK
To get more information, please click here
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Pari
The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.
For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.
For more information, click here.
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Vancouver, Canada
The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23rd Workshop for the Study of Vascular Anomalies, in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.
The Scientific Program will be a venue to present the latest advances in research and science in vascular anomalies. It will also feature introductory and advanced sessions that attendees can use to increase their knowledge in the fundamentals and advanced topics in the field. ISSVA 2020 will provide a multidisciplinary forum for many specialties including – but not limited to - interventional radiologists, dermatologists, plastic surgeons, ENT surgeons, oncologists, pediatricians, pediatric surgeons, and pathologists.
The ISSVA Workshop has continuously grown thanks to your dedication to the field and participation in the meeting. We invite you to participate in ISSVA 2020 to help us continue this trend of knowledge sharing through oral presentations, difficult cases, and poster sessions.
More information here
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Stockholm, Sweden
The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.
ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most. Outputs from these conferences have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.
The overarching theme for this conference is The rare disease patient journey in 2030. We will address the issues that matter today to rare disease patients and those who support them, while also anticipating the needs of tomorrow's rare disease patients and families so that innovative and sustainable responses can begin to be developed.
The European Joint Programme on Rare Diseases serves as official partner of the conference. For more information, click here.
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