Newsletter #29 - May 2019

The French network on rare multisystemic vascular diseases (FAVA-Multi) will hold their annual meeting on June 7th, 2019 in Paris, France.

Marine Hurard, VASCERN Project Manager, will give an update on the European Reference Networks (and VASCERN in particular) and Prof. Guillaume Jondeau, VASCERN coordinator, will give an update on the Clinical Patient Management System (CPMS).

The VASCERN coordination team as well as other French VASCERN HCP and ePAG representatives will also be in attendance at this event.

To consult the agenda of this event (in French), click here!

 Registration is now open for the 13th Annual International Scientific Conference!

 This June 12 - 16, in San Juan, Puerto Rico for invited speakers, cross-disciplinary sessions, abstract poster viewings, and more! Early Bird pricing is now live through April 30. Register here

This biennial meeting is a must-attend for both established and early-stage researchers, clinicians experienced in treating HHT, those entering the field, and patients interested in learning more on the medical side.

The 9th International Conference of the International Lymphoedema Framework (ILF) will take place from June 13-15th, 2019 in Chicago, USA.

VASCERN PPL-WG member, Dr Kristiana Gordon, is already a confirmed to speak at this event.

For more information, click here

The European Human Genetics Conference hosted by The European Society of Human Genetics (ESHG) will take place from June 15-18, 2019 in Gothenburg, Sweden.

Prof Bart Loeys, member of the HTAD-WG and MSA-WG, is a confirmed speaker at this event.

To see the list of speakers : click here 

For the programme of the event : click here 

For more information click here 

The 8th meeting of the European Reference Networks Coordinators Group (ERN-CG) will take place in Brussels Belgium on the 24^th of  June 2019.

Both VASCERN's coordinator, Prof. Guillaume Jondeau, and Project Manager, Marine Hurard, will be in attendance.

One representative per ERN will participate in the focus group meeting of WP17 of EJP-RD. The meeting will take place on 26 June in Leiden

The objective of this focus group meeting will be to develop the ERN research training program based on the EJP-RD ERN survey results

The meeting participants will discuss details for the two main schemes – training workshops/seminars and fellow exchanges - that the ERN research training program will be made of. Topics to be discussed include topic prioritisation, participants/fellow selection and assessment.

The MSA-WG face-to-face meeting will take place on July 1, 2019 in London, UK. It will be hosted by Dr. Leema Robert, Chair of the MSA-WG.

The 7th Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 10^th to July 12^th 2019.  This summer school (aimed mainly for clinicians, physician-scientists, postdocs, and PhD students) is organised by radiz - Rare Disease Initiative Zürich of the University of Zurich.

A wide variety of subjects in the arena of rare diseases will be covered. There will be lectures given by national and international rare disease experts, workshops and poster presentations by participants. Subjects include drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases.

Up to 30 participants will be admitted, so space is limited. Participants are expected to bring a poster about their work or research interests related to rare diseases.

Find the full programme here.

For all further information, including the application procedure, click here.

Application deadline is April 2^nd 2019.

For more informations click here or here.

25-27 Aug 2019

Krakow, Poland

ICE Kraków Congress Centre

Registration free until 01.08.2019

Bringing the world of cardiology together :

• 32,000 healthcare professionals
• From 150 countries
• 4,500 abstracts presented
• 500 experts sessions
• 400 cardiology topics
• 200 exhibiting companies
• 5 days of scientific sessions

More informations : click here 

The Pediatric and Primary Lymphedema WG (PPL WG) face-to-face meeting will take place on September 12-13th, 2019 in London. It will be lead by Dr Malou Van Zanten (PPL WG member from HCP St Georges).
Members of PPL-WG are invited to a dinner on the evening of September 12.

The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).

For more informations : click here 

VASCERN's annual seminar, VASCERN Days 2019, will take place from Novembre 7-8, 2019 in Brussels Belgium!

The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23^rd  Workshop for the Study of Vascular Anomalies,  in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.  Vancouver is great site for this Workshop!  It is a city that unites an urban metropolis with the sea and mountains.  It will also be the first time since 2008 that the Workshop will be held in North America.

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.