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 12th 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 13th 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 6th, 2018. It was divided into three main times:
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 14th 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 11th 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):
Photo Credits:
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 28th 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
Dr. Sophie Jung est spécialiste en Odontologie et Immunologie. Après une formation en Chirurgie Dentaire à l’université de Strasbourg, elle effectue une thèse de Sciences sur le lien entre infections et maladies auto-immunes, puis un post-doctorat sur les déficits immunitaires à Fribourg-en-Brisgau. Elle enseigne aujourd’hui à la Faculté de Chirurgie Dentaire de l’Université de Strasbourg et effectue ses activités de recherche à l’Institut de Biologie Moléculaire et Cellulaire (IBMC) de Strasbourg (CNRS UPR 3572). Elle prend également en charge des patients atteints de maladies rares, en particulier de sclérodermie systémique, aux Hôpitaux Universitaires de Strasbourg.
Que pensez-vous du projet RARENET ?
« C’est un projet qui m’apporte beaucoup, dans le sens où il me permet d’avoir un cadre mieux défini pour mon parcours et mes recherches. Certaines personnes ne comprennent pas toujours le lien qu’il peut exister entre les maladies auto-immunes et les maladies à expression bucco-dentaire. Avec RARENET, cependant, ce lien est légitimé par un projet commun. Le projet est aussi intéressant car il permet la coopération avec des enseignants et chercheurs en Allemagne. Finalement, RARENET m’offre la possibilité de passer plus de temps avec mes patients sclérodermiques. »
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.
