VASCERN Newsletter #36 - January 2020

The MSA WG monthly meeting will take place on February 6th at 6pm.

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

The PPL WG monthly meeting will take place on February 17th, 2020 at 5:30 pm (CET).

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 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 VASCA WG monthly meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (CET).

The 9th VASCERN Council meeting will take place on February 19th 2020 from 5:30 pm to 7 pm (CET).

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

The HTAD WG monthly meeting will be taking place on February 24th from 5pm to 6pm.

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 MSA WG monthly meeting will be taking place on March 4th 2020 at 6pm (CET).

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).

VASCERN's Registry Working Group Chair, Professor Leo Schultze Kool, will be in attendance at this event.

World Lymphoedema 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.

More information here

The VASCERN ePAG monthly meeting will be taking place on the 10th of March 2020 from 10 am to 11:30 am (CET).

The International Congress Of Research On Rare And Orphan Diseases co-organized with IRDiRC and EJP-RD will take place from March 11-14, 2020 in Berlin, Germany.

• To see the agenda: click here 
• To see the time table : click here 
• To register (early registration until November 30th, 2019) : click here 

The PPL WG monthly meeting will take place on the 16th of March from 5:30 pm to 6:30 pm (CET).

The VASCA WG Monthly meeting will be taking place on March 18th 2020 from 3:45 pm to 5pm (CET).

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.

The HTAD WG Monthly meeting will take place on January 23rd 2020 from 5pm to 6pm (CET).

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.

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

VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will hold their a face-to-face meeting on May 15th, 2020 in Paris France.

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.

The PPL WG face-to-face meeting will take place at Helsinki University Hospital from June 4th to 5th, 2020 in Finland.

The HHT face-to-face meeting will take place from June 11th to 12th, 2020 at Hôpital Louis Pradel  - Hospices Civils de Lyon, in Lyon, France.

The Medium-Sized Arteries Working Group (MSA-WG)'s face-to-face meeting will take place from June 24-25th, 2020 at the HEGP Hôpital Européen Georges Pompidou in Paris, France.

Prof. Jondeau and Marine Hurard will be attending the ERN Coordinator's Group meeting on June 29th, 2020 in Brussels, Belgium.

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 European Society of Cardiology (ESC) Congress 2020 will take place in Amsterdam, The Netherlands from August 29th- September 2nd, 2020.

For more information visit the event's website here

Marine Hurard and Professor Jondeau will be attending the ERN Coordinators Group Meeting that will take place on November 11th, 2020 in Brussels, Belgium.