Newsletter #25 - January 2019

The 8th edition of the EURORDIS Black Pearl Awards will take place on February 12th, 2019 at Le Plaza Hotel Brussels.

The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day. Since 2012, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policy makers, scientists, companies and media who strive to make a difference for the rare disease community.

Programme:

18.30 – 20.45 Welcome Address & Seated Dinner

20.45 – 22.30 Awards Ceremony

22.30 – 23.00 After dinner networking

Guillaume Jondeau, coordinator of the ERN, will be present at this event.

For more information : click here 

Exctract from the presentation of the sympoisum :

EURORDIS-Rare Diseases Europe is organising the 3rd Multi-Stakeholder Symposium in February 2019 to build on the outcomes of the previous multi-stakeholder Symposia held in 2016 and 2017.
We will use the collaborative multi-stakeholder approach in the position paper ‘Breaking the Access Deadlock to Leave No-one Behind’ written in January 2018 to develop and garner broad endorsement for a ‘roadmap’ document detailing a joint vision, offering solutions and stating commitments by all players in the rare disease community aimed at accelerating the development of effective therapies and guaranteeing timely and universal access to them, thereby progressively reducing existing gaps and inequalities.
The timing of this initiative is of the upmost importance as the European Parliament elections will take place in May 2019 and the related changes in the European institutions, in particular at the European Commission, will subsequently take place. The ongoing discussion around the establishment of the Multiannual Financial Framework for the period 2021 – 2027 provides additional opportunities.
Thus, it is essential for the rare disease community to have a clear and shared ‘roadmap’ that both highlights the critical need for a European vision and offers practical solutions that are implementable by the current and future European parliamentarians by 2025.

To have more informations about it : click here

To get the entire programm : click here 

Miikka Vikkula, chair of the VASCA WG  or Claire Shovlin, chair of the HHT WG  represents vascern in this interERN group.

The ERN WG on Knowledge Generation/Working subgroup on Training and Education will hold a face-to-face workshop on February 18th, 2019, in Brussels, Belgium. VASCERN will be represented at this event by Raffaella Gaetano (Centro Malattie Rare Cardilogiche – Marfan Clinic Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco, Milan, Italy).

The event aims to present a number of activities carried out through 2017 and 2018 within the human rights, health and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases. It will take the form of an all-day conference bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority.

To get more informations about it, click here

The Pediatric and Primary lymphedema Working Group (PPL-WG) will have its face-to-face meeting in Leuven, Belgium from February 21-22nd, 2018.

This two-day meeting will be organised and hosted by Dr. Sarah Thomis, HCP Representative from the University Hospitals Leuven.

It will be the PPL-WG's second face-to-face meeting, after VASCERN Days 2018, for this second year of activity.

For a reminder, the other 4 Rare Disease Working Groups (HHT, HTAD, MSA and VASCA) all held their individual face-to-face meetings in May of this year.

Rare Disease Day 2019 will take place on February 28th, 2019!

The theme for this year's event will be Bridging health and social care. Read all about the importance of this theme to the rare disease community here

Rare Disease Day takes place on the last day of February each year and aims to raise awareness for rare diseases amongst the general public, healthcare professionals and decision-makers in order to address the needs of those living with rare diseases.

The VASCERN Coordination team will attend an event in Paris organised by The French Reference Networks on Rare Diseases along with the French network for rare vascular diseases (FAVA-Multi)

The 2nd International Congress on Advanced Treatments in Rare Diseases (RARE2019) will be held in Vienna, Austria from March 4-5th, 2019. This congress will address the challenges of Rare Diseases Treatments as well as the new therapies in development.

To see the prelimanary program click here

For all further information click here

VASCERN's Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) will have a face-to-face meeting in London, UK on March 8th, 2019.

By providing training, EURORDIS empowers patients and ensures they have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development with policy makers, industry and scientists.

EURORDIS also provides the link between training alumni and organisations such as the European Medicines Agency (EMA), where trained patients actively engage in many activities including scientific advice.

The EURORDIS Open Academy encompasses the EURORDIS Summer School, EURORDIS Winter School, EURORDIS Digital School and ePAG Capacity-Building Programme.

To get more informations, click here

Miikka Vikkula, chair of the VASCA WG  or Claire Shovlin, chair of the HHT WG  represents vascern in this interERN group.

The 7th ERN Coordinators Group Meeting will take place in Brussels, Belgium on March 23rd, 2019. VASCERN Coordinator, Professor Guillaume Jondeau and VASCERN Project manager, Marine Hurard, will be in attendance at this event.

The fourth cardiogenetics training course supported by the European Society of Human Genetics. The course venue is alternating between Manchester and Antwerp and this year the course is organized again in Antwerp (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp) from Saturday April 27^nd to Tuesday April 30^th2019.

The course is mainly intended at young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders.

For course program, all practical information and to register for the course please visit the training course website: http://ngs.uantwerpen.be/cargen2019/

Bart LOEYS, member of   VASCERN HTAD-WG will make a presentation about HTAD.

The conference will feature keynotes and discussion panels, as well as three breakout tracks
(Clinical Care, Data and Innovation, and Strategy), comprising of three sessions each.

For more informations : click here 

The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Toronto, Canada from May 8-11, 2019.

All information can be found here

VASCERN's Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) will have a face-to-face meeting in Amsterdam, The Netherlands on May, 14th, 2019.

The next full EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Details on how to register will be made available on this page shortly.

EURORDIS is offering patient fellowships for up to 40 patient advocates to attend the EURORDIS Membership Meeting 2019 Bucharest.

These fellowships aim to empower patient advocates by offering a platform for networking opportunities, access to information and sharing experiences. The programme covers:

• Registration (fee waiver)
• Travel (return trip economy fare flight or train)
• Accommodation

The total of the travel and hotel expenses reimbursed by EURORDIS cannot exceed 400€ per fellow.

To apply for a fellowship

Patient representatives wishing to benefit from this fellowship programme are invited to fill out and return the Patient Fellowship Programme Application Form.

Deadline: 28 February 2019

Selection of fellowship beneficiaries

Fellows will be selected based on their advocacy skills and objectives, by an ad-hoc committee and notified by 15 March 2019.

The selection criteria are defined in the Patient fellowship Evaluation Scale.

For more information, please contact: anja.helm@eurordis.org

For more informations about this event, click here

VASCERN's  Vascular Anomalies Working Group (VASCA-WG) will hold a face-to-face meeting from May 27-28th, 2019 in Brussels, Belgium.

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 

To see speakers : click here 

For the programm of the event : click here 

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 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.

VASCERN's annual seminar, VASCERN Days 2019, will take place from Novembre 7-8, 2019. Location and further details to be announced!

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.