The 10^th International Research Symposium on Marfan Syndrome (MFS) and Related Disorders (RD) will take place from the 3rd-5th of May, 2018 in Amsterdam, The Netherlands.

This symposium brings together the world’s leading experts (including members from the VASCERN HTAD WG) to discuss the most recent and innovative research on MFS and RD. A wide variety of topics will be discussed including sessions on  "Genetic and Environmental Modifiers of MFS and RD Phenotypic Variability" to "Medical and Holistic Treatment Options for Pain in MFS".

Early bird registration ends on February 1st, 2018! To register for this event, click here

Find the schedule for the event here

For further information, click here

 

The Marfan Foundation’s First International Patient Symposium on Marfan Syndrome and Related Disorders will be held on May 6th, 2018 in Amsterdam, The Netherlands.

This event will feature leading medical speakers from several countries, including the US, and will offer both education and support programs that were created to increase a patient's understanding of Marfan and related disorders, answer any questions about diagnosis and treatment, and improve the quality of life of patients with these diseases.

Topics pertaining to adults, teens, and children with Marfan and related disorders will be covered. The program also includes a Creating Connections Luncheon where patients can spend time networking with people in their area who also have Marfan or a related disorder.

After the main program there will be time for a meet and greet with the doctors and fellow patients from across Europe.

To register for this event click here

For more information on this event click here

 

ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.

All information & registration available here

Deadline to register: 27 April 2018
Early-bird cut off date: 15 March 2018

Programme

The VASCERN MSA WG will hold a face-to-face meeting on May 23rd, 2018 in the framework of the Pan London aortopathy meeting at Guy's Hospital in
London, UK. Further details TBA.

The Pan-London Aortopathy meeting with Focus on Pregnancy will take place in London on the afternoon of May 23rd, 2018. This meeting will follow the MSA-WG face-to-face meeting in the morning.

Dr. Leema Roberts and Dr. Yaso Emmanuel (Chair and member of the MSA-WG) will give a presentation entitled "Introduction to the European Reference Network (ERN) for Rare Vascular diseases" and a discussion period will allow participants to give their feedback on what topics they think should be covered by the soon to be created 'pills of knowledge' by the MSA-WG.

Read the full programme here

 

Our VASCA-WG will assemble for a face-to-face meeting on Monday May 28th in Amsterdam, The Netherlands.

This meeting will be held before the ISSVA 22nd International Workshop, that runs from May 30th-June 1st, 2018. More details here.

The VASCERN HHT-WG will have a face-to-face meeting in London, UK on May 29th, 2018. Further details on this meeting TBA.

The VASCERN HTAD-WG will hold a face-to-face meeting in Brussels, Belgium on May 29th, 2018. Further details on this meeting TBA.

An RD-Action workshop, co-organised with the European Medicines Agency (EMA) and with DG Sante, will take place in London from May 29th-30th, 2018.

This event hopes to showcase the ERNs to the EMA, to explore how ERNs can add value to clinical trials/studies, and to define some concrete steps towards a more strategic engagement with the EMA, in particular, in future.

Prof Claire Shovlin (Chair of our HHT-WG) will represent VASCERN at this event.

More information TBA.

The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended by specialists from expert centres all around the world.

All of the HCP members of the VASCA WG will be represented and a large number of them will equally be speaking at the event or presenting posters. Our VASCA-WG will use this opportunity to assemble for a face-to-face meeting on Monday May 28th.

This year, for the first time, patient organisations will be actively involved and there will be a Patient Organisations meeting that will take place on the afternoon of Tuesday May 29^th, 2018.

This biannual meeting, which is attended by a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, presents the latest developments in this fast moving area.

Watch the promotional video here

Early bird registration deadline: 16 March 2018

Discounted registration deadline: 1 May 2018

All information and registration on the event page here

The 8th International Lymphoedema Framework (ILF) Conference will take place from the 6^th-9^th of June, 2018 in Rotterdam, the Netherlands. This conference, hosted by the ILF and the Dutch Lymphoedema Framework (NLNet) will be a great opportunity for healthcare professionals, researchers, patients, and industry to discuss the latest advances in the treatment and care of lymphoedema and to raise awareness in order to make it a priority on all national health agendas.

There will also be a Children's Day on June 9th, where children can participate in a variety of workshops all centered around the theme ‘Children and edema: a dynamic duo’.

Register here

For more information, click here!

The EURORDIS summer school is taking place in Barcelona from the 11 - 15 June 2018. This year, the summer school will focus on educating patients and researchers on the regulatory process of orphan medicinal products in Europe in order to strengthen their advocacy skills. The last day to register for the English edition is November 30^th, 2017 and the last day to register for the Spanish edition is December 15^th, 2017.

All information here

The latest advances in human genetics will be explored at the the 51st European Human Genetics Conference in Milan, Italy from June 16-19, 2018. Participants from all over the world will be in attendance and VASCERN members, Prof Laurence Boon (VASCA WG) and Prof Miikka Vikkula (Chair of VASCA WG) will be speakers at this exciting event.

Deadline to submit an abstract: Friday, March 9, 2018

Early bird deadline: Friday, April 6, 2018

Link to programme here

For further information visit the event website here

The second meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on June 22, 2018 in Brussels, Belgium.

The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

The International Congress on Advanced Treatments in Rare Diseases (RARE2018) will take place from July 2-3, 2018 in London, UK. This congress will address the challenges of developing rare disease treatments as well present the latest in rare disease therapies.

Early bird registration, until March 14, 2018,  here

For full programme, click here

For further information click here

The 6^th radiz Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 11^th to July 13^th 2018. It is organised by radiz, a clinical research priority program of the University of Zurich with collaborations between the Children's Hospital Zurich, the University of Zurich, and the UniversityHospital Zurich.

Lectures by national and international rare disease experts, workshops and poster presentations by participants will all take place during this 3 day event!

Application deadline: April 9^th 2018.

See preliminary programme here

For more information click here

The European Society of Cardiology (ESC) Congress 2018, the world's largest cardiovascular congress, will take place from August 25-29th, 2018 in Munich, Germany.

For more information click here

Early Registration Deadline: May 31, 2018.

Register for this event here

The 6th International Summer School Rare Disease & Orphan Drug Registries, including a “Bring Your Own Data – BYOD” to Link Rare Disease Registries session, will take place from September 10-14, 2018, at the Istituto Superiore di Sanità in Rome, Italy.

The International Summer school intends: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations, with particular attention to governance, quality, sustainability and legal issues; ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks (ERNs) and National Plans in the EU.
The School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.

The first part (September 10-12, 2018) will provide participants with useful tools and methodologies to plan, establish and manage the registry activities.
The second part (September 13-14, 2018) will be a hands-on experience (Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.

The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations involved in or intend to establish a rare disease registry, including inside European Reference Networks.

Register before May 30th, 2018 via the online registration form here

For more information click here

The 6th edition of the International Meeting on Aortic Diseases will be held from September 12-14, 2018 in Liège, Belgium.

"The main goal of The International Meeting on Aortic Diseases (IMAD) is to gather all cardiovascular clinicians and scientists to share their experiences on basic research, genetic aspects of aortic aneurysms, aortic dissections, aortitis, aortic graft infection and their treatment as well as on the new pathophysiological concepts in bicuspid aortic valve, TAVI indications and surgical treatment of aortic valve diseases and also, to provide information about the latest innovations in spinal cord protection."

Speakers at this event include Prof Julie De Backer (our HTAD WG Chair and MSA WG member) and Prof Bart Loeys (member of the HTAD and MSA WGs).

Register for this exciting event here

For the full program and all other information click here

VASCERN Days 2018 (2 days annual seminar) will take place on October 11-12, 2018 in Paris, France.

 

Europe’s largest Orphan Drug Congress will be back for an 8th session from November 6-8, 2018 in Barcelona Spain. This congress allows the rare disease community a chance to discover the latest developments and technologies in the orphan drugs industry.

All information and registration on the event page here