EURORDIS organises a ePAG face to face meeting in Paris. Paolo Federici, chair of our VASCERN ePAG group and ePAG representative for HHT will be there, together with Juergen Grunert, patient co-chair for the Medium Sized Arteries WG (vascular Ehlers Danlos), Christina Grabowski (ePAG representative for HHT) and Lise Murphy (ePAG representative for Heritable Thoracic Aortic Diseases).

All information available here 

The VASCERN Council meets every 4 months, or more depending on needs. This is the 3rd VASCERN Council meeting, following Vilnius (March) and virtual meeting last July.The Council is chaired by the Coordinator, Members are the Chairs of our Working Groups.

RD-ACTION and DG Sante organise a workshop on "How can ERNs generate, appraise and use clinical practice guidelines, to enhance the impact and deployment of consensus guidelines in national health systems?"

Following the Paris face to face meeting during the 1st annual seminar, the VASCERN Registry WG meeting #4 will take place place virtually in November.

The VASCERN Registry WG will discuss:

• The EU common minimal dataset for Rare disease registration
• The FAIR principle, which was presented to all by Dr. Marco ROOS during our 1st Annual Seminar

The VASCERN HTAD-WG (Heritable Thoracic Aortic Diseases) monthly virtual meeting takes place every 4th Monday of every month at 5 PM (GMT +1).

The HTAD-WG will discuss:

• Patient pathway
• Clinical guidelines
• Pills of Knowledge
• Registry
• Clinical case

The VASCERN PPL-WG (Pediatric and Primary Lymphedema) monthly virtual meeting takes place every 3rd Monday of every month at 5.30 PM (GMT +1).

The PPL-WG will discuss:

• Patient pathways
• Clinical guidelines
• Clinical case
• Clinical guidelines
• Registry

Ahead of the Clinical Patient Management System (CPMS) launch, the European Commission organises a virtual meeting with the ERN Coordinators

The VASCERN VASCA-WG (Vascular Anomalies) monthly virtual meeting takes place every 2nd Monday of every month at 7 PM (GMT +1).

The VASCA-WG will discuss, among others:

• Patient pathway
• Registry
• Clinical trial
• Clinical case

The VASCERN MSA-WG monthly virtual meeting takes now place every 2nd Wednesday of every month at 5 PM (GMT +1).

The VASCERN MSA-WG will discuss:

• Patient pathways
• Patient passports
• Clinical trial
• Registry project
• Clinical case

VASCERN Patient Group (ePAG - European Patient Advocacy Group) virtual monthly meeting takes place every 1st Tuesday of every month at 10 AM (GMT +1).

VASCERN eHealth WG monthly virtual meeting takes place every 1st Tuesday of every month at 5 PM (GMT+1).

The eHealth & Training / Education WG works on:

• VASCERN-APP: A free Mobile Application for IOS and Android, which will enable patients & doctors to find and reach out easily all VASCERN Centers of expertise and Patient Organisations
• Pills of Knowledge: to develop education material available in several formats, including Videos (eLearning tools)
• Availability of conferences & videos on YouTube

The HHT-WG monthly virtual meeting takes place every 1st Friday of the month at 8 AM (GMT+1).

The HHT-WG will discuss patient pathways & complex clinical cases, among others!

https://www.ashg.org/2017meeting/

During our 1st VASCERN Annual Seminar, which took place in Paris on October 13-14, 2017, our 5 Rare Disease Working Groups have conducted parallel face to face 3.5 hours work sessions in the morning on the 14th.

These RDWG face to face meetings have been very productive and all the 5 RDWG have made a lot of progresses in the implementation of our action plan.

During our 1st VASCERN Annual Seminar, which took place in Paris on October 13-14, 2017, our Transversal Working Groups have conducted parallel face to face 2 hours work sessions in the afternoon on the 14th.

The eHealth & Training/Education WG, as well as the Patient Registy WG have met.

These face to face meetings have been very productive and both WGs have made a lot of progresses in the implementation of our action plan.

he VASCERN 1st annual seminar will take place in Paris on October 13-14th! This event will gather 80 participants, including all our Members for the first time!

  @VASCERN 

Follow & tweet with us using #VASCERNdays2017

All our 31 Healthcare Providers Members will be represented by 1 or 2 representatives. 12 Patient Organisations, Members of our Patient Group (ePAG), will be represented as well.

Besides our Members, several VASCERN stakeholders (including the European Commission (ERN team, ERN IT team), ERN Board of Member States French representative, EURORDIS, FAIR Database, the European Joint Programme on Rare Diseases Research, ORPHANET, RD-Action) will be here.

On October 13th, it will be the first face-to-face gathering of all VASCERN Members since the official launch in Vilnius. This will be the opportunity to discuss:

• The structure and the functionning of the network since March, 2017;
• The state of play with regard to the implementation of our 1st year action plan (March 2017-February 2018);
• The patient involvement within VASCERN, in cooperation with EURORDIS;
• The achievements, challenges and opportunities for ERNs;
• The VASCERN Terms of Reference during the official VASCERN Board meeting.

On October 14th, the five VASCERN Rare Disease Working Groups will held parallel working sessions in the morning.

In the afternoon, the transversal WGs on eHealth-Training & Education and on Patient Registry will gather.

Programme available here

Stay tuned to get the latest news about our 1st Annual Seminar!

Every 2 years, ISL Conference welcomes 1.000 doctors and therapy professionals from all over the world, to benefit from new research and innovate solutions to the many issues faced by health practitioners who treat people with lymphatic dysfunction.
New deadline for abstract submission : 31st March 2017

More information and registration here

http://www.nsva.no/

The European Society of Vascular Surgery organises its 31th annual meeting in Lyon on September, 22-23rd 2017.

All information here

The Aortic Aneurysm Symposium is organised by our HCP Member Prof. Bart Loeys, from the University Hospital of Antwerp (Belgium), in cooperation with Prof. Jolien Roos-Hesselink from the Erasmus Medical Center (Rotterdam, The Netherlands). Several of our HCP Members from HTAD (Heritable Thoracic Aortic Diseases) will make presentations: Prof Julie De Backer (Ghent University Hospital), Prof Yskert von Kodolitsh (University Medical Center Hamburg-Eppendorf)

More information:

FlyerAntwerpenmeeting

The Aortic Dissection Awareness Day in Milan is organised by our Member Dr Alessandro Pini. VASCERN will be presented! All information on the programme here

Info on the Aortic Dissection Awareness Day

VASCERN will be represented at this international summer school.

More info here

http://eadvgeneva2017.org/

International Symposium of Vascular Anomalies.

In the framework of the European Society of Cardiology Congress in Barcelona, the VASCERN HTAD-WG will have its monthly WG meeting in person.

More info here

Monthly meeting of the VASCERN Pediatric and Primary Lymphedema WG.

In Prague, over two days, 14 leading experts will review recent advances across the spectrum of cardiology. Interact with colleagues, exchange information and ideas, and get updated – helping you to provide the best care for your patients!

Programme: here

All information and registration here

All information and registration here

VASCERN MSA-WG Monthly "virtual" meeting takes place every 4th Monday of the month at 5.30pm (GMT+1). The MSA-WG (Medium Sized Arteries - Vascular Ehlers Danlos) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

VASCERN HTAD-WG Monthly "virtual" meeting takes place every 4th Monday of the month at 5pm (GMT+1). The HTAD-WG (Heritable Thoratic Aortic Diseases) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

The next VASCERN PPL-WG Monthly "virtual" meeting will takes place on Monday 26th June, at 5pm (GMT+1). The PPL-WG (Pediatric and Primary Lymphedema) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

On June 20th & 21th, there will be a Joint meeting of the ERN Board of Member States (BoMS) and the ERN Coordinator's Group (ECG). Issues such as: call for new ERN members joining existing networks, affiliated partners, monitoring of ERNs and relationships between ERNs and Industry will be tackled.

There will be a training session on the clinical case management system.

The ECG (ERN Coordinator's Group) will meet and discuss issues such as Governance, ERN IT system, eHealth call for ERNs, research, health programme, monitoring & assessment of ERNs.

The VASCERN Ethics-WG first virtual meeting will take place on June 14th.

VASCERN VASCA-WG Monthly "virtual" meeting takes place every 2nd Monday of the month at 7pm (GMT+1). The VASCA-WG (Vascular Anomalies) will discuss during these meetings all actions to be implemented by VASCERN. Once the Clinical Case Management Platform will be available, the experts will be able to discuss and share expertise for complex clinical cases to provide cross-border healthcare and conduct virtual consultations.

Abstract submission here until February 28th

This International event will gather world’s leading HHT experts in both basic research as well as clinical practice, including our VASCern HHT-WG Chairs and Members.

Hans Jurgen-Mager, MD, PhD, HCP Representative and Member of the VASCern HHT-WG is also Co-Chair of the Cure-HHT Organising Committee for this international meeting.

All information and registration available here

In the framework of the Cure HTT 12th International Scientific Conference held in Dubrovnik, Croatia on June 8-11th, our VASCERN HHT-WG Members will have a first VASCERN HHT-WG face-to-face meeting.

VASCERN ePAG (Patient Group) representatives are meeting every first Tuesday of the month at 10am (GMT+1) in order to work together, share views and be involved in all VASCERN actions.

VASCERN eHealth-WG monthly "virtual" meeting takes place every first Tuesday of the month at 5.30pm (GMT+1). The eHealth-WG works on all the transversal eHealth topics. The WG is especially in charge of the development of the VASCERN Mobile Application, which will facilitate cross-border healthcare and pathways throughout Europe in rare vascular diseases.

VASCERN will be represented at this workshop.

"ERNs need to be able to demonstrate their impact across a broad range of fields and activities, which requires carefully-selected indicators and at the same time a monitoring system including Key Performance Indicators should be set up to follow up the activity and caseload of the ERNs."

This workshop is organised by the French Ministry of Research.

More information and registration here

Save the date! All information about the meeting and the patient fellowships are available here

Info and registration here 

More info here

Meeting organised by EURORDIS with the Patient Group (ePAG) on the development of the ePAG and EURORDIS support

The eHealth WG, Chaired by Dr Alessandro Pini, Representative of our Member Centro Malattie Rare  – Marfan Clinic, Milan, Italy, will have its first monthly virtual meeting on May, 2nd. The agenda includes the development of our VASCERN Mobile Application for cross-border healthcare. This Mobile Application (for IOS and Android Smartphone) will enable patients and professionals to easily find all necessary contact information about the expertise centers in rare vascular diseases.

Organised by Rare Diseases Ireland. Info and registration here

The European Commission organises a Workshop on Rare Diseases Registries in Madrid (March 21-22nd), on the dissemination of the 2008-2015 Health Programme results. This is organized in cooperation with the Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III - Spanish Ministry of Economy, Industry and Competitiveness. The event will disseminate results of the EU Health Programme co-funded conducted projects and Joint Actions on Registries.

The future European platform on Rare Diseases Registration, as well as Registries through the European Reference Networks will be tackled.

Registration until March 20th here

Agenda here

This high-level workshop is organised by the Maltese Presidency of the EU Council of the European Union at the Grand Master’s Palace , in parallel to the informal meeting of EU Ministers of Health. The Maltese Presidency has established Rare Diseases as one of its core priorities.

European Reference Networks will be represented to this meeting.

"The aim is to discuss the possibilities for structured cooperation in rare diseases research, tools, and healthcare at the EU level and ways of adapting already existing programmes by scaling them up and integrating them under the same umbrella, creating a sustainable ecosystem of knowledge generation."

The European Commission (DG Health) organises the 3rd European Reference Networks Conference on March, 9-10th in Vilnius, Lithuania.

The ERN Conference will focus on the presentation of the newly 24 approved European Reference Networks, and will be the official launch and start of ERNs (see here the list of approved ERNs).

There will be an ERN awarding ceremony, introduced by the EU Commissioner for Health, Vytenis Andriukaitis, who will also open the ERN Conference.

The conference on 9th will tackle topics such as:

• Coordination, management & governance of ERNs;
• ERN IT platform as core element for eHealth, telemedicine, sharing of expertise in complex clinical cases;
• EU policies and support to ENRs (research, registry platform, rare diseases policy…);
• ERN and national healthcare systems;
• The way forward with perspectives of Healthcare providers, patient representatives, ERN Coordinators, Member States.

On March 10th, the 24 new ERNs will officially start working with a kick-off meeting!

VASCERN will hold its first face-to-face Council kick-off meeting on 10th, with a part of VASCERN HCP and Patient representatives (Chairs and co-chairs of VASCERN Working Groups).

Agenda here

All information and live webstream on March, 9th here

Watch the video for the World Lymphedema Day! 

All information and registration here

How to get involved and support Rare Diseases Day 2017: here

All information available here

The European Commission organises a ERN journalist study visit at the University Hospital of Leuven. Prof Guillaume Jondeau, VASCERN Network Coordinator and Dr Sarah Thomis, Univ. Hospital of Leuven HCP Representative, Member of the Pediatric and Primary Lymphedema WG (PPL-WG) will present VASCERN, together with a PPL Patient representative (Be-Lymph).

All information and registration  here

A special event on Marfan Syndrome and Loeys-Dietz is organised by the University of Antwerp and Bindweefsel.be. More information here

VASCERN Vascular Anomalies (VASCA) Working Group Members first meeting as an ERN group

"The event is the first of its kind to be organised in Geneva and will gather international experts in the fields of public health, human rights, epidemiology, scientific research and patient advocacy to discuss why and how rare diseases should be included in the global health agenda."

All information and registration here

The third conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France.

All information here Programme here Registration here 

Prof Guillaume Jondeau will present VASCERN at the 20th Turin Meeting on Rare Diseases (ERN Roundtable). The European Commission as well as 5 other ERNs will be there and make presentations!