VASCERN Newsletter #34 - November 2019
 |
A look back at VASCERN Days 2019
This year our annual seminar and board meeting, VASCERN Days 2019, travelled to the vibrant city of Brussels, Belgium! The two day seminar took place from November 7-8th at Radisson… |
 |
New VASCERN Affiliated Partner from Austria
VASCERN now has its third official Affiliated Partner: Medical University Graz, from Graz, Austria This center will be represented by Dr. Paolo Gasparella and and Dr. Emir Haxhija, pediatric surgeons… |
 |
General Patient Pathway for Pediatric and Primary lymphedema now available
We are happy to announce that the General Patient Pathway for Pediatric and Primary Lymphedema (PPL), by our PPL Working Group (WG), is now online! Look at the General Patient… |
 |
New ePAG patient advocate for Vascular Anomalies
We would like to welcome Aaike van Oord to VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Vascular Anomalies! Aaike is from the Netherlands, and is… |
 |
VASCERN Spotlights: Dr. Michael Frank
During VASCERN Days 2019, we were lucky enough to catch up with Dr. Michael Frank, Co-Chair of the Medium-Sized Arteries Working Group (MSA WG), from Paris, France for a VASCERN… |
 |
New HTAD WG Consensus Statement on screening and management of patients with ACTA2-related vasculopathy published!
We are happy to announce that the position statement by the Heritable Thoracic Aortic Diseases (HTAD) Working Group entitled European reference network for rare vascular diseases (VASCERN) consensus statement for… |
 |
New VASCERN Affiliated Partner from Slovenia
VASCERN is happy to welcome our second official Affiliated Partner: Univerzitetni klinični Center Ljubljana, from Ljubljana, Slovenia. This Slovenian Associated National Centre, will be represented by Dr. Tanja PLANINŠEK RUČIGAJ, a dermatologist who… |
 |
16 New Pills of Knowledge from the Medium-Sized Arteries (MSA) WG’s vascular Ehlers-Danlos syndrome study day in London!
The Medium-Sized Arteries Working Group (MSA WG) held a brief face-to-face meeting in London on the morning of July 1st, 2019. Chaired by Dr. Leema Robert, the meeting was attended… |
 |
Update on Marfan Bakoumba book translations
As presented in a previous article, Bakoumba is a Marfan children’s book, originally published by the French Marfan Association - Association MARFANS, which is now being translated into various European languages.… |
 |
Happy 20 years to the Belgian Association of Marfan Syndrome (ABSM)!
The Belgian Association of Marfan Syndrome (ABSM) celebrated their 20 year anniversary on Saturday October 5th, 2019 at the Palais des Académies in Brussels, Belgium. VASCERN was very pleased to… |
-
Wed04Dec20196:00 pmwebex
The MSA WG Monthly Meeting will take place on December 4th from 6 to 7pm (Paris time).
-
Mon09Dec20191:00 pmwebex
The VASCA Lymphangiography task force meeting will take place on December 9th at 1 pm (Paris time, UTC +1).
-
Tue10Dec201910:00 amZoom
The Monthly ePAG Meeting will take place on December 10th from 10am to 11:30am (CET time zone).
-
Tue10Dec201910:00AM-11:30AM (CET)Videoconference call - Webex
The Meeting of the Knowledge Generation WG will take place on Tuesday December 10th, 2019. Natasha Barr will represent VASCERN at this meeting.
-
-
Mon16Dec201917:30PM-18:30PM (CET)Videoconference call - Webex
The PPL Monthly meeting will take place on December 16th, 2019 from 5:30pm to 6:30pm (Paris time).
-
Mon16Dec20198:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT WG monthly meeting #33 will take place on December 16th, 2019 at 8 am (Paris time).
-
Wed18Dec201915:45PM-17:00PM (CET)Videoconference call - Webex
The VASCA Monthly meeting will take place on December 18th, 2019 from 3:45pm to 5pm (Paris time).
-
Wed08Jan202018:00PM-19:00PM (CET)WebEx
The VASCERN MSA WG Monthly Meeting will take place on January 8th, 2020 from 6 to 7pm (Paris time).
-
Tue14Jan202010:00AM-11:30PM (CET)Zoom
The ePAG monthly meeting will take place on January 14th, 2020 from 10:00AM-12:00PM
-
Wed15Jan202015:45PM-17:00PM (CET)Videoconference call - Webex
The VASCA Monthly meeting will take place on January 15th, 2020 from 3:45pm to 5pm (Paris time).
-
Mon20Jan202017:30PM-18:30PM (CET)Videoconference call - Webex
The VASCERN PPL WG monthly meeting will take place on January 20th, 2020 from 5:30PM-6:30PM.
-
Mon27Jan202017:00PM-18:00PM (CET)Videoconference call - Webex
The HTAD Monthly meeting will take place on January 27th, 2020 from 5:00pm to 6pm (Paris time).
-
Mon27Jan20208:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT WG monthly meeting #34 will take place on January 27th, 2019 at 8 am (Paris time).
-
Thu05Mar2020Fri06Mar2020Italy
Synergies for defining domain specific "common data elements" across ERNs is a workshop that will take place on 05-06 March 2020 at the JRC premises in Northern Italy (close to Milan)
-
Wed11Mar2020Sat14Mar2020Berlin, Germany
-
Sat21Mar2020Sun22Mar2020Paris
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.
The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.
For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.
For more information, click here.
-
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.
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.
More information here
-
Fri15May2020Sat16May2020Stockholm, Sweden
The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.
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 a proud an Associate Partner of this event.
Submissions for poster abstracts are open until February 10th, 2019. 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.
-
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.
-
Fri13Dec2019
A preliminary announcement on the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2020 has just been released! The topic for this call is "Pre-clinical research to develop effective therapies for rare diseases"
Research proposals must cover at least one of the following areas:
- Development of novel therapies in a preclinical setting (including small molecules, repurposing drugs, cell and gene advanced therapies) focusing on condition(s) with unmet medical needs
- Use of disease models suitable for medicinal product’s development according to EMA guidelines
- Development of predictive and pharmacodynamics (PD) biomarkers (with appropriate analytical methods e.g. OMICS) in a preclinical setting (e.g. in the validated model or in pre-collected human samples) for monitoring the efficiency of the therapy. The model chosen must mimic the human diseases and be transposable so that the biomarker identified in animals can be valid for humans
- Proof of principle studies fostering an early (pre-clinical) stage of drug development (excluding interventional clinical trials of phase 1-4).
The maximum duration of the project is three years and the consortium submitting a proposal must involve 4-6 (up to 8, if inclusion of partners from underrepresented countries or Early Career Researchers) eligible principal investigator partners (no more than two from the same country).
There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals.
The call is scheduled to open on: December 13, 2018.
Pre-proposal submission deadline: 12th February 2020.
For more information on this call, please click here
