Newsletter #24 - November 2018
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VASCERN Spotlights: Dr. Robert Damstra
VASCERN Spotlights: Dr. Robert Damstra What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it… |
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Professor Miikka Vikkula wins First Generet Award!
We would like to congratulate Professor Miikka Vikkula, our Vascular Anomalies Working Group (VASCA-WG) Chair, for being awarded the first Generet Award, with a prize of €500,000 for research into… |
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Do’s and Don’ts Factsheets for Pediatric and Primary Lymphedema available!
A new chapter has just been added to VASCERN Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations: the Pediatric and Primary Lymphedema Working Group (PPL-WG) have now completed… |
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New #EUProtects video featuring the ERNs!
The European Commission's EU Protects campaign (#EUProtects) aims to raise awareness of the various ways in which the EU combats global challenges to protect its citizens and their latest video… |
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4th Conference on European Reference Networks
The 4th Conference on European Reference Networks for rare diseases (ERNs) took place on November 21-22, 2018 in Brussels, Belgium. To read the official summary report from the European Commission,… |
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New ERN Information Video and Flyer for patients and healthcare professionals!
The European Commission has just released a new flyer and video about the European Reference Networks aimed at informing patients and healthcare professionals about how the ERNs work. It introduces… |
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VASCERN Days 2018: Highlights from our 2nd Annual Seminar!
VASCERN's second annual seminar, VASCERN Days 2018, took place on October 11-12th, 2018 in Paris, France! In attendance were 70 healthcare professionals from all of our 31 Healthcare Provider Members as well as European Patient Advocacy… |
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Mon10Dec201810:00AM-11:00AM (CET)Videoconference call
The H2020-PCN-Santé is organizing a webinar on December 10, 2018 (at 10 AM) to provide information on the European Joint Programme on Rare Diseases (EJP-RD) and its future calls for projects that will begin in 2019.
The webinar will be in French.
To register (participant number is limited) click here
For more information, click here
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Tue11Dec201810:00AM-11:00AM (CET)Videoconference call - Webex
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Tue11Dec201817:00PM-18:00PM (CET)Videoconference call - Webex
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Wed12Dec2018
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Fri14Dec201814:00PM-15:00PM (CET)Videoconference call
The H2020-PCN-Santé with the ANR (French Research Agency) will organise a Webinar on December 14, 2018 at 2PM on the different ERA-NET cofund actions for Health and their upcomong calls.
Webinar will be in French.
For more information, click here
To register (limited space available) click here
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Mon17Dec2018
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Wed19Dec2018
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Thu21Feb2019Fri22Feb2019Leuven, Belgium
The Pediatric and Primary lymphedema Working Group (PPL-WG) will have its face-to-face meeting in Leuven, Belgium from February 21-22nd, 2018.
This two-day meeting will be organised and hosted by Dr. Sarah Thomis, HCP Representative from the University Hospitals Leuven.
It will be the PPL-WG's second face-to-face meeting, after VASCERN Days 2018, for this second year of activity.
For a reminder, the other 4 Rare Disease Working Groups (HHT, HTAD, MSA and VASCA) all held their individual face-to-face meetings in May of this year.
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Thu28Feb2019
Rare Disease Day 2019 will take place on February 28th, 2019!
The theme for this year's event will be Bridging health and social care. Read all about the importance of this theme to the rare disease community here
Rare Disease Day takes place on the last day of February each year and aims to raise awareness for rare diseases amongst the general public, healthcare professionals and decision-makers in order to address the needs of those living with rare diseases.
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Fri08Mar2019London, UK
The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) will have a face-to-face meeting in London, UK on March 8th, 2019.
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Wed08May2019Sat11May2019Toronto, Canada
The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Toronto, Canada from May 8-11, 2019.
All information can be found here
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Mon27May2019Tue28May2019Brussels, Belgium
The Vascular Anomalies Working Group (VASCA-WG) will hold a face-to-face meeting from May 27-28th, 2019 in Brussels, Belgium.
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Thu13Jun2019Sat15Jun2019Chicago, USA
The 9th International Conference of the International Lymphoedema Framework (ILF) will take place from June 13-15th, 2019 in Chicago, USA.
VASCERN PPL-WG member, Dr Kristiana Gordon, is already a confirmed to speak at this event.
For more information, click here
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Thu14Feb2019
A preliminary announcement on the first Joint Call for Proposals of the European Joint Programme on Rare Diseases (EJP RD): "Transnational research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases” has been released!
The official call is scheduled to open on December 14, 2018, with the indicative deadline for submitting the pre-proposals being foreseen for February 14, 2019
To read all about the upcoming call click here
The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006. This effort is now continued in the frame of the European Joint Programme on Rare Diseases (EJP RD) that has been established to further help in coordinating the research efforts of European, Associated and non-European countries in the field of rare diseases and implement the objectives of the International Rare Disease Research Consortium (IRDiRC).
