Rare Disease Day 2018 will take place on February 28th, 2018! This yearly International event aims to to raise awareness for Rare Diseases with the general public and policy-makers and everyone is encouraged to take part!

There will be numerous events all around the world, including a Rare Disease Day 2018 event in Paris, France organised by the French Rare Disease Networks. The "Rare Disease Village" will take place in Paris under the canopy of the Forum des Halles. Visitors will be able to participate in a wide variety of interactive activities including a central area dedicated to adaptive sports, rare disease quizzes with prizes, a photobooth and various workshops on different themes such as "Dare Diseases and Nutrition" and "Introduction to Rare Disease Research". This event aims to reach out to the general public in order to raise awareness for rare diseases.

VASCERN will equally be in attendance at this event in order to inform the public about VASCERN and the European Reference Networks (ERNs) in general. We look forward to seeing you  there!

For a list of events near you click here

All information at https://www.rarediseaseday.org/

The official 2018 Rare Disease Day video is now available (in 24 languages)! Find it here

The 4th ERN Coordinators Group Meeting will take place on March 5th, 2018 in Brussels, Belgium.

The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Bologna, Itlay from July 7-10, 2018.

All information about the RE(ACT) CONGRESS & registration available here.

For a limited time, a special registration rate for the RE(ACT) Congress 2018 is available. The special price is 250 Euros (only payable by credit card and not applicable to private companies). To benefit of the special rate, please register on the registration page and insert the promotional code “HAPPYCRAZYRATE” at the end of the form.

All information on this conference here

More information at www.research4rare.de 

Announcement

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

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

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

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 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 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

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

Location is to be confirmed!

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