Newsletter #26 - February 2019
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3 a week Campaign for Marfan Patients – Start moving for your health!
VASCERN is pleased to support the 3 a week campaign that has been launched by the patient advocates and healthcare professionals of the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG).… |
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13 New VASCERN Pills of Knowledge Videos on YouTube!
[vc_row][vc_column][vc_column_text] We are delighted to release the 13 new Pills of Knowledge (PoK) videos (12 in English and 1 in French) that were filmed during our 2-day annual seminar (VASCERN… |
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VASCERN Spotlights: Alessandro Pini
VASCERN Spotlights: Alessandro Pini This month we had the chance to interview Dr. Alessandro Pini, a cardiologist from Milan, Italy. Dr. Pini is Chair of VASCERN’s eHealth Working Group as… |
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A look back at Rare Disease Day 2019
For Rare Disease Day 2019, members of the VASCERN team in Paris once again joined the French Rare Disease Networks (including members of FAVA-multi), Patient Associations, The Rare Disease Expertise Platform… |
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New collaborative HHT-WG publication on prevention of serious infections in HHT
A new collaborative publication entitled Prevention of serious infections in hereditary hemorrhagic telangiectasia: roles for prophylactic antibiotics, the pulmonary capillaries- but not vaccination has just been published in the scientific… |
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PPL-WG Face to Face Meeting in Leuven
The VASCERN Pediatric and Primary Lymphedema Working Group (PPL-WG) held their face to face meeting from February 21-22nd, 2019 at the University Hospitals Leuven (UZ Leuven) in Belgium. This meeting… |
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Orphanet text on HHT updated by the VASCERN HHT-WG!
We are happy to announce that the Orphanet entry on Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Encyclopedia for Professionals has been updated by the VASCERN HHT-WG and is now… |
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Give blood for the #myHHTvalentine campaign!
Started by the patient organisation HHT Onlus in Italy 5 years ago, the #myHHTvalentine campaign is back this year with the aim to raise awareness for Hereditary Haemorrhagic Telangiectasia (HHT)… |
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New collaborative publication from HHT-WG on safety of thalidomide and bevacizumab
A new collaborative publication by the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG) entitled Safety of thalidomide and bevacizumab in patients with hereditary hemorrhagic telangiectasia has been published in the Orphanet… |
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VASCERN Spotlights: Lise Murphy
VASCERN Spotlights: Lise Murphy "What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to… |
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Thu14Mar2019
North American Vascular Biology Organization (NAVBO) is highlighting HHT research in its webinar series with Stryder Meadows, Ph.D., Assistant Professor, Stepping Stone Foundation Early Career Professor in the Department of Cell and Molecular Biology at Tulane University presenting “Angiopoietin-2 inhibition rescues arteriovenous malformation in a SMAD4 HHT mouse model”.
Dr. Meadows’ presentation will be related to 2 papers:
- Vascular Deficiency of Smad4 Causes Arteriovenous Malformations: a Mouse Model of Hereditary Hemorrhagic Telangiectasia. Angiogenesis, 2018 – https://www.ncbi.nlm.nih.gov/pubmed/29460088
- Angiopoietin-2 Inhibition Rescues Arteriovenous Malformation in a Smad4 Hereditary Hemorrhagic Telangiectasia Mouse Model. Circulation, accepted Jan 11, 2019
For more informations, click here
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Fri15Mar201912:30PM-13:30PM (CET)Videoconference call - Webex
The ERN Research WG will their monthly videoconference meeting on March 15th, 2019.
Prof. Miikka Vikkula, chair of the VASCA WG or Prof. Claire Shovlin, chair of the HHT WG, will represent VASCERN in this interERN group.
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Mon18Mar201917.30-18.30
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Wed20Mar2019
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Mon25Mar2019Brussels, Belgium
The 7th ERN Coordinators Group Meeting will take place in Brussels, Belgium on March 25th, 2019. VASCERN Coordinator, Professor Guillaume Jondeau and VASCERN Project manager, Marine Hurard, will be in attendance at this event.
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Mon25Mar201917.00-18.00
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Tue02Apr201917.00-18.00
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Wed10Apr2019Sun12May2019Gaylord National Harbor Hotel, Oxon Hill, Maryland USA
The World Orphan Drug Congress USA focuses on the most pressing challenges and opportunities to bring rare disease therapies to patients faster.
Bringing together a global gathering of 1,200 leaders in orphan drugs from 50 countries, the World Orphan Drug Congress USA will feature over 135 presentations covering all aspects of orphan drug development and rare disease research.For more information about this event, click here
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Sat27Apr2019Tue30Apr2019Antwerp, Belgium
The fourth cardiogenetics training course supported by the European Society of Human Genetics will take place from Saturday April 27th to Tuesday April 30th 2019.
The course venue alternates 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)
The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders.
Prof. Bart Loeys, member of the VASCERN HTAD-WG will give several presentations at this event, including one on aortopathies.
For the course program, all other practical information and to register for the course please visit the training course website: http://ngs.uantwerpen.be/cargen2019/
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Thu02May2019Fri03May2019Rotterdam, the Netherlands
The International Consortium for Health Outcomes Measurement (ICHOM) Conference 2019 will take place from May 2-3rd, 2019 in Rotterdam, The Netherlands.
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 information: click here
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Wed08May2019Sat11May2019Toronto, Canada
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
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Tue14May2019Amsterdam, The Netherlands
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.
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Thu16May2019Sat18May2019Bucarest, Romania
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
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Mon27May2019Tue28May2019Brussels, Belgium
VASCERN's Vascular Anomalies Working Group (VASCA-WG) will hold a face-to-face meeting from May 27-28th, 2019 in Brussels, Belgium.
This meeting is organized in Brussels ( Cliniques universitaires Saint Luc.) and hosted by Miikka Vikkula ( Chair of VASCA working-group).
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Fri31May2019Wed04Sep2019Paris, France
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
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Fri07Jun2019Paris, France
The French network on rare multisystemic vascular diseases (FAVA-Multi) will hold their annual meeting on June 7th, 2019 in Paris, France.
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Wed12Jun2019Thu13Jun2019PUERTO RICO
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 at: https://lnkd.in/eVKpvGH. 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.
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Thu13Jun2019Sat15Jun2019Chicago, USA
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
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Sat15Jun2019Tue18Jun2019Gothenburg, Sweden
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
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Mon01Jul2019London
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Wed10Jul2019Fri12Jul2019Warth (Canton Thurgau), Switzerland
The 7th Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 10th to July 12th 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 2nd 2019.
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Tue06Aug2019Philadelphia
The Penn Medicine Orphan Disease Center (ODC) will host the 6th Annual Million Dollar Bike Ride to raise money for rare disease research. Every donation made to Team LGDA / LMI will be matched by Penn Medicine ODC up to $30,000 and will be used to fund research into these rare diseases. Highline Park - 31st & Chestnut Philadelphia. PA 13/34/72 Mile Options -
Thu12Sep2019Fri13Sep2019
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Thu19Sep2019Sun22Sep2019Drammen, Norway
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Thu07Nov2019Fri08Nov2019TBA
VASCERN's annual seminar, VASCERN Days 2019, will take place from Novembre 7-8, 2019. Location and further details to be announced!
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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. 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.
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