The VASCERN PPL-WG Monthly Meeting will take place on December 21st, 2020 at 5:30 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on December 16th, 2020 at 3:45 pm (Paris time).

The monthly meeting of this interERN Working Group will take place online on December 14th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The VASCERN MSA-WG Monthly Meeting will be taking place on December 14th, 2020 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on December 8th, 2020 from 10 am to 11:30 am (Paris time).

The European Medicines Agency (EMA) is organising a Workshop on Support for Orphan Medicines Development which will take place online on November 30th, 2020 from 9AM-1pm.

This virtual event aims to encourage early and efficient interactions with the regulators by highlighting pre-marketing support in medicine development in rare diseases. Existing tools such as orphan designation, protocol assistance and PRIME scheme will be highlighted and explained in the context of early product development strategy.

For the agenda click here

To register click here

For more information click here

The VASCERN HHT-WG Monthly Meeting #41 will take place on November 27th, 2020 at 8 am (Paris time).

The ERN Coordinators Group Meeting will take place online on November 27th, 2020 from 9 AM to 4 PM (CET). Professor Jondeau and Marine Hurard will be attending.

The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 26th, 2020 from 3 PM to 4 PM (CET).

The Internal ERN Coordinators Group Meeting will take place online on November 25th, 2020 at 5:00PM (CET).

The monthly meeting of this interERN Working Group will take place online on November 23rd, 2020 at 11 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The VASCERN HTAD-WG Monthly Meeting will take place on November 23rd, 2020 at 5 pm (Paris time).

The joint ERN ReCONNET and VASCERN webinar on cardiovascular aspects of Ehlers-Danlos syndrome (EDS) will take place on November 20th, 2020 at 2 PM (CET).

Medium-Sized Arteries Working Group (MSA-WG) Chair, Dr. Leema Robert, and MSA-WG (and ERN ReCONNET) member Dr. Fransiska Malfait will discuss the various types of EDS with cardiovascular manifestations, including vascular EDS!

To register, click here.

The GenTAC Aortic Summit Highlights Webinar will take place on Thursday, November 19, at 7 pm ET (1am CET - webinar will be recorded).

This webinar will give an overview of the highlights from the GenTAC Aortic Summit 2020 with Kim Eagle, MD, GenTAC Chair, and Josephine Grima, PhD, Chief Science Officer for The Marfan Foundation, presenting. It is a great opportunity for the patient community to learn what researchers around the world discussed at the recent scientific meeting, which included topics on familial aortopathy, Marfan syndrome, VEDS, chronic aortic aneurysms, exercise and Marfan syndrome, aortic surgery, and more.

Register to attend the live webinar, or to receive the recording of the webinar, here

The VASCERN VASCA-WG Monthly Meeting will take place on November 18th, 2020 at 3:45 pm (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on November 16th, 2020 at 5:30 pm (Paris time).

The International Congress on the Effects of COVID19 on People with Rare Diseases, organised by Share4Rare, will be held online on November 9th, 11th and 13th, 2020.

The congress arises from the recent creation of the international registry of patients with rare diseases and COVID-19, which aims to improve the current knowledge of the effects of this new infectious disease in rare disease patients. The initiative is fostered by Share4Rare, aimed at connecting and educating families affected by rare diseases, as well as promoting collaborative research through the sharing of clinical information from relatives and patients.

Register here

Access the full agenda  here

The VASCERN MSA-WG Monthly Meeting will be taking place on November 9th, 2020 at 5 pm (Paris time).

The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 5th, 2020 from 3 PM to 4 PM (CET).

The Internal ERN Coordinator's Group Meeting will take place online on November 4th, 2020 at 5:00PM (CET).

The monthly meeting of this interERN Working Group will take place online on October 28th, 2020 at 2:00 PM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The 8th ERN IT Advisory Group Meeting will take place online on Tuesday October 27th, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

Due to the COVID-19, VASCERN's annual seminar, VASCERN Days 2020, will take place online from October 22-24th, 2020!

This year, we will come together using the Whova event app and Webex for our virtual meeting sessions.

We look forward to welcoming our participants to this online 3-day seminar! Currently we are expecting 76 Healthcare Provider (HCP) representatives, 12 representatives from our 7 Affiliated Partners and 22 European Patient Advocate Group (ePAG) patient advocates, as well as 35 invited stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases), Eurordis, members of our VASCERN Registries Project team, EJP-RD, the French Ministry of Health, AP-HP Bichat Hospital and more!

Access the full, detailed program here

An overview of the agenda for this 3-day online seminar can be seen below:

Day 1: Thursday, October 22^nd

8.45-12.05 VASCERN ANNUAL BOARD MEETING

9.00-9.20 VASCERN’s Management & Coordination

9.20-9.35 VASCERN’s Enlargement & Cooperations

9.35-9.45 Inter-ERN Working Group on Legal & Ethical Issues and Relations with Stakeholders: cooperation with the industry

10.00-11.00 Work Packages

10.00-10.35 Implementation (7’ per RDWG Chair)

10.35-11.00 Q&A, sharing best practices & inter-RDWGs projects

11.00-11.15 Q&A and approval by the Board

11.30-11.45 European Patient Advocacy Group (ePAG) views, projects & new developments, including Q&A

11.45-12.05 Clinical Patient Management System (CPMS)

13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS

Including 14.30-16.00: RDWGs CPMS clinical case discussions (clinicians only)

16.00-16.15 Council meeting (Chairs only) to select the 5 topics for the Day 2 Brainstorming plenary session

Day 2: Friday, October 23rd

 8.30-9.00 Research: European Joint Programme on Rare Diseases (EJP RD): calls and opportunities & Q&A

9.15-9.45 VASCERN’s Registry WG

10.00-11.00 Brainstorming on 5 strategic topics selected by the RDWGs (12’by topic, each topic discussion moderated by the Chair of the RDWG)

11.45-12.15 Pregnancy Working Group chaired by Julie De Backer

13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS, including interRDWG sessions

16.00-16.30 Board plenary: RDWGs’sessions summary outcomes & introducing the way forward (6’ per RDWG)

Day 3: Saturday, October 24^th

 9.00-12.00 PPL & VASCA WORKING GROUPS - PARALLEL SESSIONS

PPL: CPMS Clinical Case Discussions (clinicians only)

VASCA: Implementation of Work Packages

 12.30-13.30 - European Patient Advocacy Group (ePAG) separate wrap-up

The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday October 15th, 2020 from 3 PM to 4 PM (CET).

The VASCERN ePAG Monthly Meeting will be taking place on October 13th, 2020 from 10 am to 11:30 am (Paris time).

The 2nd cross-ERN surgical based Working Group Meeting will take place online on October 9th, 2020 at 4:00 PM (CEST).

Registration is now open for the GenTAC Aortic Summit 2020, one of the premier meetings in the world focused on sharing knowledge and advancing research on genetic aortic disease!

The meeting, which is specifically for scientists and clinicians, will be virtual, with presentations on-demand beginning September 29, 2020 and live discussions on October 8 and 10, 2020.

The Call for Abstracts for the Aortic Summit is available as well. Abstracts for innovative research and clinical topics related to advancing therapeutic strategies and management should be submitted by September 11. Six abstracts will be chosen for live presentation on Thursday, October 8, from 7:30 - 8:30 pm, during our Cocktails and Posters session. All other abstracts will be available for viewing in our exhibit hall where questions and answers can be posted.

The GenTAC Aortic Summit, a biennual event, originated in 2009 as part of the mission of the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Conditions (GenTAC). Its objective are to share current knowledge of the scientific underpinnings of genetic aortic disease; review current best practices related to diagnosis and treatment; and foster scientific and educational exchange.

Professor Guillaume Jondeau (VASCERN coordinator) will give an update of the VASCERN registry during the "Registry Update" session on October 10th, 2020.

For more information and to register for the GenTAC Aortic Summit 2020, please click here.

For the full schedule please click here

Please find the full announcement here

If you have questions, please email GenTAC@marfan.org

The monthly meeting of this interERN Working Group will take place online on October 6th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

An international training course titled "International Summer School on Rare Disease Registries and FAIRification of Data”, Istituto Superiore di Sanità, Rome, Italy, will occur online from September 28th to October 2nd, 2020.

This initiative is a part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD). For more information about the EJP RD, have a look here: https://www.ejprarediseases.org/

The 5 days training course is composed of two modules, the first three days on Rare Disease Registries and the final two days on FAIRification of Data. You can attend a single training module or the entire training course.

Online registration until July 19th, 2020: https://sondage.inserm.fr/index.php/257338/lang-en

Programme and other information: https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf

Important dates, deadlines, and further information: https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/

The VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).

The ERNs Indicator Webinar will occur online on September 24th, 2020 from 2 PM to 5 PM (CET).

The next inter-ERN Knowledge Generation Working Group Meeting will be held on September 23rd, 2020 from 2 PM to 3:30 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

The European Medicines Agency (EMA) is organising a virtual workshop on benefit-risk of medicines used during pregnancy and breastfeeding on September 22nd, 2020 from 12 PM to 17:25 PM (CET).

The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).

Aortic Dissection Awareness Week will take place from September 19-26, 2020 and is a week to raise awareness about aortic disease around the world. It is a day to create community for people who care about aortic disease, to celebrate survivors, and to share life-saving information in order to reach people who are at risk.

Many events will be taking place around the world, such as a free virtual conference by the John Ritter Foundation and the Genetic Aortic Disorders Association Canada- register here

You can also raise your hands for Aortic Disease Awareness here

For more information, follow the AD Awareness week Facebook page here

The 12th VASCERN Council Meeting special VASCERN Days 2020 will take place online on September 18th, 2020 at 5 PM (CET).

The Joint brainstorming session of the ERN Board of Member States and ERN Coordinators Group will occur online on Friday September 18th, 2020 from 9 AM to 12 PM (CET).

The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).

The European Joint Programme on Rare Diseases (EJP RD)'s second General Assembly and Consortium meeting will take place from 14 to 18 September 2020. Due to Covid-19, the 2020 GA meeting will be held online.

The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on September 8th, 2020 from 10 am to 11:30 am (Paris time).

The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).

The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.

For more information visit the event's website here.

VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E³ International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.

CLICK HERE TO REGISTER NOW!

Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.

Highlights include:

• The ABCs of Marfan in six different languages
• Research talks that address recent breakthroughs and hope for the future
• Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
• A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
• Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
• Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
• Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
• Opportunities to connect with other people in the worldwide community through the Summit app

See the full agenda here

For the latest information on this event, visit the event page on the Marfan Foundation website here

The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #38 will take place on July 24th, 2020 at 8 am (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).

The 2020-2 CEF Telecom call virtual Info Day will take place on Thursday 16 July 2020 and will cover seven priorities of the 2020 CEF Telecom calls that opened on June 30th, 2020.

• BRIS
• Cybersecurity
• eArchiving
• eHealth 
• eProcurement
• European Digital Media Observatory
• European Platform for Digital Skills and Jobs
• Public Open Data

Register here

For agenda and more information, visit the event page here

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 15^th to July 17^th 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.

The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).

The ERN Project Managers Meeting (part 1 of 2) will take place on Wednesday July 15th, 2020 at 9AM. Marine Hurard, VASCERN Project Manager, will be in attendance at this event.

The VASCERN ePAG Monthly Meeting will be taking place on July 14th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN Registry WG Kick-Off Meeting will take place online on July 9th, 2020 at 2:30 pm (Paris time).

The 1st ERN Transversal Study Group on Pregnancy and Family Planning will take place on Monday July 6th, 2020 at 3:30PM CET.

This new ERN Study Group will allow for the creation of strong synergies with already existing initiatives as well as promote a transversal approach to the important topic of pregnancy and family planning in all rare and complex diseases. Members of VASCERN (Professor Julie De Backer (HTAD WG Chair) and Doctor Leema Robert (MSA WG Chair)) will be in attendance at this event along with members from at least 18 other ERNs.

This year, the annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place online from 9AM-1:30PM on Friday June 26th, 2020.

VASCERN Project manager, Marine Hurard, will give a short presentation on the latest VASCERN and ERN news and will answer any questions.

Due to the COVID-19, the VASCERN MSA-WG Meeting will now take place online. The meeting will occur on June 25th, 2020 from 2 pm to 5 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on June 22nd, 2020 at 5 pm (Paris time).

EURORDIS will organise a webinar on June 18th from 16.30 to 18.00 (CEST) to provide an opportunity to have a preliminary discussion on what are the data needs of the ERNs and how to progress towards a comprehensive ERN data strategy.

The webinar is open to ePAG advocates, RD National Alliances and EU Federations, ERN Coordinators and Project Managers, Hospital Managers, European Commission and all interested in attending.

Please register using the following link: https://us02web.zoom.us/webinar/register/WN_-cl6DH9lQLe-15MHOPJp0w 

The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).

Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.

The Internal ERN Coordinator's Group Meeting will take place online on June 15th, 2020 at 6:30PM.

Due to the COVID-19, the VASCERN HHT-WG Meeting will now take place online. The meeting will occur on June 12th, 2020 from 9 am to 12:30 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).

In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE has been organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat the patients with COVID-19.

The webinar: "Impact of COVID 19 for people living with a Rare Disease" will take place on Tuesday, June 9th, 2020 from 11.00 – 12.00 CET and will feature speakers from EURORDIS (Inés Hernando, ERN and Healthcare Director and Sandra Courbier, Social Research Director). The results of the latest Rare Barometer Survey, "Rare disease patients' experience of COVID-19", will be presented!

To join the webinar, click the following link: https://europaevent.webex.com/europaevent/onstage/g.php?MTID=ee90be256b3426dd2ef596106f27bdc45

meeting ID (access code) (if requested): 956 694 201

For agenda and more technical information on how to join, click the link here.

Due to the COVID-19, the VASCERN PPL-WG Meeting will now take place online. There will be NO on-site event in Helsinki. The meeting will occur from June 4th to 5th, 2020 from 9 am to 12 pm (Paris time).

The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).

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.

Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23^rd 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.

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 15th, 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.

VASCERN will hold a webinar on Thursday May 14, 2020 from 5:30-7pm CET on Heritable Thoracic Aortic Diseases (HTAD) and Covid-19.

This webinar features a brief introduction on COVID-19 and the cardiovascular system, followed by a Q&A session!

Elena De Moya Rubio (ePAG Co-Chair for HTAD) and Françoise Steinbach (ePAG Deputy Co-Chair for HTAD) will ask the questions provided by HTAD patients (collected by Elena) and they will be answered by HTAD WG Chair and Co-Chair, Prof. Julie De Backer and Prof. Guillaume Jondeau.

The webinar will take place on the WebEx platform. To receive the WebEx link to connect to the webinar (or to receive the recording), please register below:

Please note all personal data collected will only be used to send the links and will be deleted after the webinar.

The VASCERN ePAG Monthly Meeting will be taking place on May 12th, 2020 from 10 am to 11:30 am (Paris time).

Due to the COVID-19, the VASCERN VASCA-WG Meeting will now take place online. There will be NO on-site event in Brussels. The meeting will occur from April 28th to 29th, 2020 from 9 am to 13 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on April 20th, 2020 at 5:30 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on April 15th, 2020 at 3:45 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on April 14th, 2020 from 10 am to 11:30 am (Paris time).

The 7th ERN IT Advisory Group Meeting will take place online on Tuesday March 31st, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

The VASCERN HHT-WG Monthly Meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on March 16th, 2020 from 5:30 pm to 6:30 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on March 10th, 2020 from 10 am to 11:30 am (Paris time).

World Lymphedema Day 2020 will take place on March 6th, 2020.

This annual advocate-driven celebration aims to raise awaresness for all types of lymphatic diseases, primary and secondary lymphedema, lipedema, lymphatic filariasis, lymphatic malformations, and the full lymphatic continuum of diseases impacted by the lymphatic system.

In preparation of this international event, the patient advocates of our European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) have created various important documents, including:

• A Manifesto signed by 23 European patient associations, currently available in English, Portuguese, German, Italian and Dutch
• A World Lymphedema Day factsheet
• Overview document for how to celebrate World Lymphoedema Day

More information on the World Lymphedema Day website here.

The VASCERN MSA-WG Monthly Meeting will be taking place on March 4th, 2020 at 6 pm (Paris time).

The 13th edition of the Rare Disease Day will be held on February 29th, 2020 worldwide!

For this international day initiated by EURORDIS - European Rare Diseases Organisation, the French networks for rare diseases (including FAVA-multi) will be reaching out to the general public by organising various events to raise awareness in cities across France. VASCERN will attend their event happening in Paris, along with several other ERNs coordinated in Paris (including EuroBloodNet and ERN ITHACA)...more details to follow!

The communications material for Rare Disease day is available on here.

The VASCERN HHT-WG Monthly Meeting #35 will take place on February 28th, 2020 at 8 am (Paris time).

The VASCERN HTAD-WG Monthly Meeting will be taking place on February 24th, 2020 from 5 pm to 6 pm (Paris time).

The first meeting of the Knowledge Generation Working Group of 2020 will be held on February 20th, 2020 at 11 am.

The 29th EURORDIS Round Table of Companies Workshop will take place on February 19th, 2020 in Brussels, Belgium. It will be a full-day workshop dedicated to the topic of medicines’ repurposing.

To register and for more information on this event, click here

The VASCERN VASCA-WG Monthly Meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (Paris time).

The 9th VASCERN Council Meeting will take place on February 19th, 2020 from 5:30 pm to 7 pm (Paris time).

The EURORDIS Black Pearl Awards will take place in Brussels, Belgium on February 18th, 2020.

This annual event recognises the outstanding achievements and exceptional work of people making a difference for the rare disease community, such as Claudia Crocione, our European Patient Advocacy Group (ePAG) Co-Chair for Hereditary hemorrhagic telangiectasia (HHT), who will be recognised with the EURORDIS Volunteer Award!

More information on this event here

The VASCERN PPL-WG Monthly Meeting will take place on February 17th, 2020 at 5:30 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on February 11th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN MSA-WG Monthly Meeting will take place on February 5th, 2020 at 6 pm (Paris time).

February is Marfan Awareness Month, a time for all of us in the community to escalate our efforts to increase Marfan awareness.

This year, the Marfan Foundation hopes you will join them in the #MarfanVictoryChallenge.

"The idea is to spread the word about Marfan syndrome – through social media; through community events, such as educational events or fundraisers at work, school, or other community settings; or through legislative activities, such as getting a local proclamation for Marfan Awareness Month."

More information on the Marfan Foundation website.

The VASCERN HTAD-WG Monthly Meeting will take place on January 27th, 2020 from 5 pm to 6 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #34 will take place on January 27th, 2020 at 8 am (Paris time).

The 23rd Conference on Immune Pathologies and Rare Diseases, organised by C.M.I.D. (Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare) will take place from January 22-25th, 2020 in Torino Italy.

Pernille Henriksen, ePAG co-Chair for the Pediatric and Primary Lymphedema (PPL-WG), and Elena Matta (ePAG patient advocate for PPL) will be in attendance at this event where they will be representing patients with primary lymphedema. Pernille will be speaking at a session on night time compression and workshops on primary lymphedema for patients and professionals will take place at this event.

See the preliminary programme here

The VASCERN PPL-WG Monthly Meeting will take place on January 20th, 2020 from 5:30 pm to 6:30 pm (Paris time).

The European Days of the French Society of Cardiology will be held at the Palais des Congrès in Paris from January 15-18th, 2020.

Both Professor Guillaume Jondeau (VASCERN coordinator) and Professor Julie De Backer (Heritable Thoracic Aortic Diseases (HTAD) Working Group Chair) will be speaking at this event about aortic risk in Marfan Syndrome, monitoring of aortic dilatation in pregnant women with cardiovascular diseases, risk of aortic dissection during pregnancy and more! Assomarfans will also have an information booth at this event to raise awareness for Marfan disease.

For all information on this event, including the programme, click here

The VASCERN VASCA-WG Monthly Meeting will take place on January 15th, 2020 from 3:45 pm to 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will take place on January 14th, 2020 from 10 am to 11:30 am (Paris time).

The VASCERN MSA-WG Monthly Meeting will take place on January 8th, 2020 from 6 pm to 7 pm (Paris time).