VASCERN Newsletter #51 - August/September 2021
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New Do’s and Don’ts factsheets on Loeys-Dietz syndrome available!
The Heritable Thoracic Aortic Working Group (HTAD WG) have just released a new series of Do's and Don'ts factsheets on Loeys-Dietz syndrome! Download them here This series of 21 new factsheets… |
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Review of the EJP-RD ERN Workshop on Advances in diagnostic and therapeutic methods for lymph flow abnormalities!
We are happy to report that the EJP RD - European Joint Programme on Rare Diseases ERN Workshop - Advances in diagnostic and therapeutic methods for lymph flow abnormalities took… |
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New Nature Reviews Disease Primer on Marfan syndrome by HTAD WG now online!
A new comprehensive review paper on Marfan Syndrome has just been published in Nature Reviews Disease Primers and is co-authored by our very own Professor Julie De Backer, Professor Guillaume… |
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Guest case from Portugal discussed in the CPMS
After a well deserved summer break, members of the Vascular Anomalies Working Group (VASCA WG) were back on the Clinical Patient Management System (CPMS) last week to discuss a new… |
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VASCERN Registries project update
The VASCERN Registries Project officially launched on May 1st, 2020 and since then much work has been done by our Registry Working Group, the Registry Technical Teams Working Group and… |
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Recording of VASCERN Webinar: On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what’s in a name? now available!
The VASCERN webinar on the topic of "On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what's in a name?" took place on June 30th, 2021. This informative webinar was presented… |
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New Do’s and Don’ts Factsheet on Skin Care & updated Patient Pathway from the Pediatric and Primary Lymphedema Working Group
The Pediatric and Primary Lymphedema Working Group (PPL-WG) have just released two documents this month: a new Do’s and Don’ts factsheet on skin care for PPL and an updated version 2… |
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Focus on World HHT Day!
June was Hereditary Haemorrhagic Telangiectasia (HHT) Awareness month and June 23rd was World HHT Day! This international event was a day to raise awareness for this rare inherited disorder of… |
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Highlights from the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) Virtual Spring Meeting
The Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) held their Spring meeting on Friday June 18th, 2021. Chaired by Professor Sophie Dupuis Girod, it was attended by 16 Healthcare Professionals from… |
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Recap of the Medium-Sized Arteries Working Group Virtual Spring Meeting!
Like last year, the Spring Meeting of our Medium-Sized Arteries Working Group (MSA-WG) took place online on June 3rd, 2021! Chaired by Dr. Michael Frank (MSA-WG Chair), it was attended… |
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Sat02Oct2021Sun03Oct2021Online
The LGDA/LMI International Conference on Complex Lymphatic Anomalies will take place online from October 2-3rd, 2021.
Organised by the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), with help from its partners the Lymphatic Malformation Institute (LMI) and LGDA-Europe, this conference will bring together patients and their families, clinicians, and researchers from around the world to advance patient-driven solutions for complex lymphatic anomalies as part of our development of an international collaborative research network supported through our membership in the Rare As One Network.
Who Should Attend:
- Patients & Families
- Physicians, Nurses, Allied Health Care Providers
- Established Researchers & Post-docs
- Medical & Graduate Students
- Rare Disease Advocates
- Others interested in vascular anomalies
Basic Science and Clinical Topics:
- Genetic Causes of Complex Lymphatic Anomalies
- Preclinical Models to Study CCLA, GLA, GSD, and KLA
- New Technologies for CLA Research
- Vascular Anomalies Registries
- Treatments for CLAs
- Imaging Features & Biomarkers
This free, two-day event has an exciting line-up of speakers, including VASCERN members Professor Miikka Vikkula (VASCA WG Chair), Professor Leo Schultze Kool (VASCA WG Co-Chair) and Professor Jochen Roessler (VASCA WG member). There will also be several "patient voice" sessions where people living with complex lymphatic anomalies share their unique journeys to diagnosis and treatment as well as their challenges and hopes for the future of research in this field. The full agenda can be seen here.
Link to the event website here
Register here
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Wed06Oct2021Fri08Oct2021Barcelona, Spain
Due to COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from October 6-8th, 2021 in Barcelona, Spain.
Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA-WG), will be one of the speakers.
REGISTRATION DEADLINE - 17 May 2021
ABSTRACT SUBMISSION DEADLINE - 17 May 2021
PAYMENT DEADLINE - 1 June 2021
For more information on this event (programme and registration), take a look here.
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Thu07Oct2021Sat09Oct2021Paris, France
VASCERN Days 2021 will take place from October 7-9th, 2021 in Paris, France. After over a year of conducting online meetings we are happy that this year's VASCERN Days will take place in person and give our members and invited stakeholders a chance to catch up!
We are expecting over 80 participants over this 3-day event including healthcare professionals from our Healthcare Provider (HCP) Full Members and Affiliated Partners, patient advocates from the VASCERN ePAG and various 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, Fondation AP-HP, AP-HP Bichat Hospital , Orphanet and more!
Don't miss live tweets throughout the event on Twitter: #VASCERNDays2021
Access the full, detailed program here
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Tue12Oct202110:00AM-11:30AM (CET)Zoom Webinar
The VASCERN ePAG Monthly Meeting will take place on October 12th, 2021 from 10 am to 11:30 am (Paris time).
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Thu14Oct20215:30 amZoom Webinar
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Mon18Oct20215:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on October 18th, 2021 at 5:30 pm (Paris time).
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Wed20Oct2021Thu21Oct2021Online
The EURORDIS Round Table of Companies (ERTC) Workshop will take place online on 20-21 October 2021 on the topic of "The impact of the EU regulatory network strategy 2020-2025 on the development of orphan medicines".
This is your opportunity to join us to discuss and gain insights into new methods to analyse data, new sources of data and changes in the way new Clinical Trials are conducted.
Register for this free workshop here
Programme here
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Wed20Oct20214:00PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on October 20th, 2021 at 4:00 pm (Paris time).
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Fri22Oct20218:00AM-9:00AM (CET)Videoconference call - Webex
The VASCERN HHT-WG Monthly Meeting will take place on October 22, 2021 at 8 am (Paris time).
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Fri22Oct20218:30AM-4:00PM (CET)Strasbourg, France
The ERN Coordinators Group Meeting will take place on October 22nd, 2021 from 8:30 AM to 4 PM (CET) in Strasbourg (France).
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Mon25Oct20215:00PM-6:30PM (CET)WebEX
The VASCERN HTAD-WG Monthly Meeting will take place on October 25th, 2021 at 5 pm (Paris time)
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Thu28Oct2021Fri29Oct2021Online
The PIK3CA Related Conditions International Scientific Meeting is hosted and sponsored by CLOVES Syndrome Community and will take place online from October 28th to 29th, 2021.
This meeting will focus on the diverse range of phenotypes of the spectrum that share a PIK3CA mutation.
The goals for this meeting are:
- To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking.
- To stimulate new ideas.
- To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
- To identify the gaps and unmet needs for our heterogenous patient populations.
Professor Miikka VIKKULA, Chair of our Vascular Anomalies Working Group (VASCA-WG), is one of the Scientific Meeting Chairs.
For more information on this event (abstract submission and registration), take a look here.
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Thu18Nov2021Sat20Nov2021Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from November 18-20th, 2021 (new dates due to COVID-19).
Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day.
See the preliminary programme here.
For more information, check out their website here.
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Mon04Oct2021
The European Joint Programme on Rare Diseases has launched the ERN Research Training Workshops funding opportunity. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.
The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25.000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged).
The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria.
Organizer's profile:
The applicant submitting workshop topics must fulfil one of the following conditions:
- Affiliated to any EJP RD beneficiary institution
- Affiliated to an ERN Full Member
- Affiliated to an ERN Affiliated Partner institution at the time when the application is submitted, as well as during the period of the execution of the workshop.
Application and more information here.
Deadline to apply October 4th, 2021
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Thu02Dec2021
The 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 next round of applications will be collected on the following date:
- December 2, 2021 at 14.00 (CET)
All information, including the call documents, can be found on the EJP-RD website here.
