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.
Newsletter #30 - June 2019
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Bakoumba: Translation of Marfan Children’s book update
Bakoumba, a Marfan children's book, is being translated from French (originally published by the French Marfan Association -Assomarfans) into various EU languages. Assomarfans has generously covered the copyright costs for all… |
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Research News: New Heritable Thoracic Aortic Diseases Working Group (HTAD WG) Collaborative Publication
A new collaborative publication entitled Genetic counselling and testing in adults with congenital heart disease: A consensus document of the ESC Working Group of Grown-Up Congenital Heart Disease, the ESC Working Group on Aorta and Peripheral Vascular Disease and the European Society of Human Genetics has just been published in the European Journal of Preventive Cardiology. It is co-authored by members of the VASCERN Heritable Thoracic Aortic… |
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New patient advocate for Pediatric and Primary Lymphedema (PPL)
After the nomination of the Pernille Henriksen last month as the European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL WG), it looks like… |
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New translations of Do’s and Don’ts Factsheets for Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Working Group – HTAD WG) now available!
We are happy to inform you that new translations of VASCERN's Do's and Don'ts factsheets for the chapter Marfan Syndrome and Related Disorders (by the HTAD-WG) are now available! As… |
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New translations of Do’s and Don’ts factsheets for Pediatric and Primary Lymphedema (by the PPL-WG) now now available!
We are happy to inform you that new translations of VASCERN's Do's and Don'ts factsheets for the chapter Pediatric and Primary Lymphedema (PPL-WG) are now available! As a deliverable of… |
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VASCERN at the 5th annual FAVA-Multi Day!
The 5th Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day took place on Friday June 7th, 2019 in Paris, France. Professor Guillaume Jondeau, VASCERN and FAVA-Multi coordinator, opened the… |
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VASCERN Spotlights: Dr Sophie Dupuis-Girod
This month we have the pleasure to interview Dr. Sophie Dupuis-Girod from Lyon, France. Dr Dupuis-Girod is Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group and talks about how… |
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A look back at the Vascular Anomalies Working Group (VASCA WG) face-to-face meeting!
The Vascular Anomalies Working Group (VASCA WG) held their face-to-face meeting over two days from May 27th- May 28th, 2019 in Brussels Belgium at the De Duve Institute. The meeting,… |
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New ePAG Co-Chair for the Pediatric and Primary Lymphedema Working Group!
We are happy to announce that VASCERN's new European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL-WG) is Pernille Henriksen! "My name is Pernille… |
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Summary of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) face-to-face meeting in Amsterdam!
The Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) held their face-to-face meeting in Amsterdam on May 14th, 2019. Chaired by Prof. Julie De Backer, the meeting was attended by 19… |
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Tue02Jul2019
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Wed03Jul2019
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Thu04Jul20191:00 pm
When is it? Thursday, 4th July, 2PM CET
Where is it? Join in from your laptop/desktop
Who’s doing it? Presented by Con Hennessy, CEO, OpenApp
Why should I be there? To get a better understanding of what an ERN population registry might look like.
What’s it all about? An introduction to a JRC compatible ERN registry, how to collect data from multiple data sources, and how to engage patients and clinicians/HCPs. Full details below.
To register and have more information, click here
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Tue09Jul2019
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Wed10Jul2019Fri12Jul2019Warth (Canton Thurgau), Switzerland
The 7th Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 10th to July 12th 2019. This summer school (aimed mainly for clinicians, physician-scientists, postdocs, and PhD students) is organised by radiz - Rare Disease Initiative Zürich of the University of Zurich.
A wide variety of subjects in the arena of rare diseases will be covered. There will be lectures given by national and international rare disease experts, workshops and poster presentations by participants. Subjects include drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases.
Up to 30 participants will be admitted, so space is limited. Participants are expected to bring a poster about their work or research interests related to rare diseases.
Find the full programme here.
For all further information, including the application procedure, click here.
Application deadline is April 2nd 2019.
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Mon15Jul201917.30-18.30
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Wed17Jul201915.30-17.00
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Thu18Jul201910.00-16.00
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Mon22Jul201917.00-18.00
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Fri26Jul2019
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Tue06Aug2019Philadelphia
The Penn Medicine Orphan Disease Center (ODC) will host the 6th Annual Million Dollar Bike Ride to raise money for rare disease research. Every donation made to Team LGDA / LMI will be matched by Penn Medicine ODC up to $30,000 and will be used to fund research into these rare diseases. Highline Park - 31st & Chestnut Philadelphia. PA 13/34/72 Mile Options -
Tue06Aug2019
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Wed07Aug2019
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Mon19Aug2019
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Wed21Aug2019
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Sun25Aug2019Tue27Aug2019
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Mon26Aug2019
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Sat31Aug2019Wed04Sep2019Paris, France
Bringing the world of cardiology together :
- 32,000 healthcare professionals
- From 150 countries
- 4,500 abstracts presented
- 500 experts sessions
- 400 cardiology topics
- 200 exhibiting companies
- 5 days of scientific sessions
More informations : click here
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Thu12Sep2019Fri13Sep2019London
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. -
Mon16Sep2019Thu19Sep2019Gdansk, Poland
VASCERN will be represented at this event.
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Thu19Sep2019Sun22Sep2019Drammen, Norway
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Mon23Sep2019Fri27Sep2019Istituto 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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Mon30Sep2019
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Thu07Nov2019Fri08Nov2019TBA
VASCERN's annual seminar, VASCERN Days 2019, will take place from Novembre 7-8, 2019 in Brussels Belgium!
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Tue12May2020Fri15May2020Vancouver, 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. Vancouver is great site for this Workshop! It is a city that unites an urban metropolis with the sea and mountains. It will also be the first time since 2008 that the Workshop will be held in North America.
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.