This month we had the chance to talk to European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Vascular Anomalies Working Group (VASCA WG), Maria Barea. Maria represents the patient organization VASCAPA from Belgium and shares with us the most memorable moments of her VASCERN experience so far, her greatest…
VASCERN Newsletter #38 - March 2020
VASCERN Spotlights: Maria Barea
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Eurordis reports alert over discrimination in critical care guidelines during COVID-19 pandemic and proposes concrete solutions
Eurordis has released a new statement following reports from member organisations and individuals that people living with a rare disease are being discriminated against in critical care guidelines designed to… |
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European Commission launches the “COVID-19 Clinical Management Support System” based on the ERN’s CPMS
Inspired by the Clinical Patient Management System (CPMS), currently used by the European Reference Networks (ERNs) to discuss complex clinical cases, the European Commission launched on March 24th, 2020 the… |
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Celebrating World Lymphedema Day!
World Lymphedema Day (WLD) took place on March 6th, 2020 and the patient organisations and patient advocates for Pediatric and Primary Lymphedema (PPL) of VASCERN’s European Patient Advocacy Group (ePAG) were in full force raising… |
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COVID-19 recommendations from VASCERN’s Rare Disease Working Groups.
With the current global spread of the novel coronavirus SARS Cov-2, causing COVID 19, the healthcare professionals of VASCERN's Rare Disease Working Groups have produced recommendations for the rare vascular… |
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Two special Council meetings to discuss new HCP applications
The first step of the ERN application revision process (eligibility check by the European Commission) for new Healthcare Provider (HCP) members closed at the end of January. VASCERN is happy… |
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Do’s and Don’ts factsheets for Marfan syndrome now available in Swedish
The Do’s and Don’ts Factsheets on Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Diseases Working Group; HTAD WG) have now been translated into Swedish! Take a look… |
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Rare Disease Day 2020
This year, Rare Disease Day fell on the rarest day of the year, Saturday February 29th, 2020 (a leap year)! In France we were lucky enough to attend an event… |
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New VASCERN Affiliated Partner from Cyprus!
With the bilateral agreement signed we are happy to welcome our newest affiliated partner: The Cyprus Institute of Neurology and Genetics, from Nicosia, Cyprus! This Associated National Center will participate… |
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New ePAG patient advocate for Pediatric and Primary Lymphedema from Spain
We are very pleased to announce that Juan Lameiro has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Pediatric and Primary Lymphedema (PPL). Juan is from Spain… |
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Wed15Apr20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on April 15th, 2020 at 3:45 pm (Paris time).
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Mon20Apr20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on April 20th, 2020 at 5:30 pm (Paris time).
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Mon27Apr20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).
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Tue28Apr2020Wed29Apr2020Videoconference call - Webex
Due to the COVID-19, the VASCERN VASCA-WG Meeting will now partly take place online. There will be NO on-site event in Brussels. More information to come.
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Wed06May20206:00PM-7:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will take place on May 6th, 2020 at 6 pm (Paris time).
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Thu14May2020Fri15May2020Videoconference
Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23rd Workshop for the Study of Vascular Anomalies, that was scheduled to take place in Vancouver, British Columbia, Canada from May 12-15, 2020 has been postponed by two full years, to 10-13 May 2022
In place of an in-person meeting in 2020, there will be an ISSVA Online Workshop on the Thursday and Friday of the original meeting dates: 14-15 May 2020!
The Scientific Program will be based on the in-person meeting's program and will be a venue to present the latest advances in research and science in vascular anomalies. ISSVA Online 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.
Members of the Vascular Anomalies (VASCA) Working Group will attend this online event and various posters by the group will be presented.
Click here to register.
If you have already registered for the ISSVA 2020 (Vancouver) in person meeting, you can transfer your registration fees to the ISSVA Online Workshop by using the below survey: Transfer your ISSVA 2020 (Vancouver) Registration to the Online Workshop.
More information on the ISSVA Online Workshop here.
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Thu14May2020Sat16May2020100% Online
In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE from May 14th to 16th, 2020. There will be NO on-site event in Stockholm.
More information here.
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.
The European Joint Programme on Rare Diseases serves as official partner of the conference and VASCERN is proud to be an Associate Partner of this event.
Submissions for poster abstracts are open until February 10th, 2020. More information here.
Applications for the Patient Advocate Fellowship Programme are open until December 2nd, 2019. More information here.
For more information on this event, take a look at the official ECRD website or the ECRD LinkedIn page.
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Mon18May2020Tue19May2020Online
The Rare Diseases International (RDI) 6th Annual Meeting will be hosted completely online from May 18th to 19th, 2020. This event will bring together rare disease patient organisations from Latin America, North America, Europe, Asia and Africa to learn from each other and carry the voice of patients from their disease areas, countries and regions.
For more information on this event and to see the programme, click here.
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Mon18May20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on May 18th, 2020 at 5:30 pm (Paris time).
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Wed20May20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).
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Mon25May20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).
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Thu04Jun2020Fri05Jun2020Videoconference call - Webex
Due to the COVID-19, the VASCERN PPL-WG Meeting will now partly take place online. There will be NO on-site event in Helsinki. More information to come.
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Mon29Jun2020Tue30Jun2020Brussels, Belgium
Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting on June 29th, 2020 in Brussels, Belgium.
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Wed15Jul2020Fri17Jul2020Kartause Ittingen, Warth
The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15th to July 17th 2020.
The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.For more information, go to their website.
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Sat29Aug2020Wed02Sep2020Amsterdam, The Netherlands
The European Society of Cardiology (ESC) Congress 2020 will take place in Amsterdam, The Netherlands, from August 29th to September 2nd, 2020.
For more information visit the event's website here.
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Thu01Oct2020Sat03Oct2020Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from October 1-3, 2020.
For more information, check out their website here.
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Sat07Nov2020Sun08Nov2020Paris
Due to the recent global updates with COVID-19, the Society has decided to postpone the European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21-22, 2020.
Both the conference and the HEDGE screening have been rescheduled for November 7-8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families and caregivers (in place of March 22).
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.
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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Thu26Nov2020Fri27Nov2020Brussels, Belgium
The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. Professor Jondeau and Marine Hurard will be attending.
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Wed13Jan2021Sat16Jan2021Berlin, Germany
The International Congress Of Research On Rare And Orphan Diseases, co-organized with IRDiRC and EJP-RD, has been postponed due to the COVID-19. The event was due to take place from March 11th to 14th, 2020 and will now take place from January 13th to 16th, 2021.
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Tue02Jun2020
The Call for the Research - European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!
The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.
Eligible applicants to apply for the NSS are health care professionals, researchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):
Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.
The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.
At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.
Maximum budget for networking event: € 30,000
The NSS is open on a continuous basis. The applications will be collected on the following dates:
June 2, 2020 at 14:00 (CEST)
September 1, 2020 at 14:00 (CEST)
December 1, 2020 at 14:00 (CET)
All information, including the call documents, can be found on the EJP-RD website here.
