Events

18 June 2018, Milan, Italy.  During the annual European Human Genetics Conference, Pr. Agnès Bloch-Zupan from RARENET gave a presentation about GenoDENT.  Click on the link to see the video on YouTube (in English).

On February 28, 2019, we celebrated the 12^th annual International Rare Disease Day at the shopping mall Rivetoile in Strasbourg.  It was a day full of information, sharing and fun!  Check it out for yourself:

Photo Booth:
www.giforama.fr/rarediseaseday

Alsace 20 (  starting at 6:24)
https://www.alsace20.tv/VOD/Actu/JT/Jeudi-28-fevrier-Votre-JT-tout-en-images-1DwTpVTbag.html

YouTube

And don’t forget: the 13^th edition is coming to Strasbourg on Saturday, February 29, 2020!  More information about this “rare” event coming soon!

In Germany, RARENT also participated in a 2-day BBI (Bed and Bench Immunology) seminar on February 28 and March 1, 2019.  The theme of the seminar was immune deficiencies.

RARENET Project improvements

The event “Let’s draw the future!” dedicated to the improvements of the project RARENET, took place at Strasbourg University Faculty of Dental Surgery, July 5th and 6^th, 2018. It was divided into three main times:

• A first symposium dedicated to neural crests, which was organised in partnership with research group Crest Net. This net concentrates on neural crests studies. Conferences, poster exhibitions, and scientific discussions were on this symposium agenda.
• A second symposium concentrated on the Lupus Biobank projects. It took place July 6^th. On this occasion, French, German, and Austrian researchers dedicated their time to these projects presentations.
• Finally, July 5^th evenings was devoted to a playful presentation of RARENET improvements. Project partners, symposium participants, but also members of Strasbourg University, of the INTERREG programme, of the Eurometropolis, as well as various practitioners, enriched this event with their attendance and active participation.

Note that, the illustrators Violaine Leroy and Nicolas Bottereau have, through drawing battles, greatly animated the last part of this RARENET event.

photo credits:

Valentine Labouheure

Drawing credits:

Violaine Leroy

Nicolas Bottereau

“My child born with a cleft lip and palate” took place June 14^th 2018. This information day was fully dedicated to cleft lip and cleft palate, a rare disease that results in a lip and palate deformity.

The event was organised by professors Bruno Grollemund and Delphine Wagner, both orthodontists and professors at the Faculty of Dental Surgery of the University of Strasbourg. It reassembled more than 90 participants.

Through various interdisciplinary presentations, and more informal discussions, this symposium has enabled students, orthodontists, dental surgeons, and other medical professionals, to understand the possible evolution of this disease, and to weight the importance of early medical care.

The 11^th edition of Rare Disease Day was taking place on February 28, 2018. On this occasion, RARENET, SENSGENE and their partners were animating an information stand in the commercial centre Rivetoile in Strasbourg. The program included: painting one’s face with the colours of the day, a quiz on rare diseases, individualised pictures and workshops to learn more about rare diseases. Many people took part to the activities and could ask their questions to scientists and members of patients’ support groups. At 2pm, everyone came together for a group picture in order to show their support for research and the fight against rare diseases.

The media coverage of the event (in French):

• France 3 Alsace :

12/13 of February 28

19/20 of February 28

• Alsace 20
• France bleu Alsace
• Radio Dreyeckland
• Radio Judaica

Photo Credits:

Heidy B-Photo

Claire Edel

Christelle Olivès

François Stockart

Virginie Haushalter is a post-doctorate researcher at the Laboratory of Medical Genetics (LGM) of the University of Strasbourg (UMR S_1112) and works on the biological samples collected as part of the RARENET project. On Tuesday, 13th of February, she will be giving a presentation on rare diseases, RARENET and her role as a scientist of the project at the K-fet des Sciences in Strasbourg.

Every year, Rare Disease Day is organized on the last day of February. This year it will take place on the 28^th of February and the theme is « Research ». It is the occasion for RARENET and SENSGENE to propose several activities around the topic of rare disease in the shopping centre Rivetoile in Strasbourg.  We hope to see you there on February 28!

Our Interreg Volunteer Youth – IVY volunteer François Stockart spoke to France 3 Alsace yesterday about the European Solidarity Corps and his experience at RARENET: http://bit.ly/2BFKBAP (JT 12/13 of January 24, from 9:48).

Photo Credits: Gérard Brauer

Wonder tells the story of August Pullman, a little boy suffering from Treacher-Collins syndrome, a rare disease that causes facial abnormalities, and who is going to school for the first time. Following an initiative of the Association Anna, a preview of this film will be taking place at the UGC Ciné Cité in Strasbourg on Monday, December 18 at 8:20pm! The filière maladies rares Tetecou, O-Rares and RARENET are supporting this initiative. Prof. Bloch-Zupan, Dr. Bruno Grollemund and Dr. Elise Schaefer will participate to the discussion following the screening of the movie.

On the 8^th of December, more than 80 people participated to the symposium on enamel anomalies organized by RARENET and O-Rares at the Dental Faculty of the University of Strasbourg. The main goal of that symposium was to inform practitioners on advances in research and care of patients in this field. All day long, French and international speakers shared their knowledge on those rare diseases. You will find here pictures that will make you to re-experience this very instructive day.

Photo Credits:

Gérard Brauer

François Stockart