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