Actualités - Aktuell

Looking Back on International Rare Disease Day 2019

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

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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.

 

Séminaire BBI à Freiburg 28/02/2019

 

18 March 2019|Events|

12e journée internationale des maladies rares / à Strasbourg Rivetoile

rarediseaseday
Retrouvez-nous  le 28 février 2019 à Strasbourg Rivetoile
11h à 18h : Stand d’information sur les Maladies Rares Rencontre avec des patients et des experts
11h : Conférence de presse
12h – 18h : Quiz sur les Maladies Rares et Photo Booth
14h : Temps fort – photo de groupe RDV sur le parvis de la Médiathèque Malraux
15 – 16h : présentation de la clinique virtuelle ERN-EYE

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25 February 2019|Events, unclassified|

Manifestation: “Pôle d’innovation, région de la connaissance, qualité de vie”

RARENET participera à la manifestation « Pôle d’innovation, région de la connaissance, qualité de vie – quelle contribution des acteurs scientifiques dans la Région Métropolitaine du Rhin Supérieur ? » organisée par le Pilier Sciences.

Cette manifestation aura lieu le jeudi 27 novembre au Palais de la Musique et des Congrès (PMC) de Strasbourg.

Une présentation des outils de communication mis en place dans le cadre du projet RARENET sera assurée par Christine Laemmel, en charge de la stratégie de communication du projet. Un stand sera également tenu par les membres de l’équipe tout au long de la journée.

Pour en savoir plus : https://science.rmtmo.eu/dialog-science/dialog-science-2018/stands-projets/

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5 November 2018|Events, unclassified|

Congrès “Les Maladies Rares pour les Nuls”

Le projet RARENET a organisé, du 8 au 12 octobre, le congrès “Les Maladies Rares pour les Nuls”, à Elounda, en Grèce.
Cet événement a rassemblé des dentistes de différentes régions de France, autour des questions liées aux maladies rares et anomalies bucco-dentaires.

Au programme : discussions et présentations de ces maladies rares, mais également jeux, quiz et autres activités ludiques visant à informer les professionnels de santé, pour une meilleure prise en charge des maladies rares et anomalies dentaires.

programme_maladies_rares_pour_les_nuls_elounda_rarenet

25 October 2018|Events|

Let’s draw the Future!

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:

  • 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 6th. On this occasion, French, German, and Austrian researchers dedicated their time to these projects presentations.
  • Finally, July 5th 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.

 

IMG_3583 IMG_3639 IMG_3632 IMG_3618 IMG_3609 IMG_3599 IMG_3594 IMG_3591Scientifique_allemand_NikolMigrationvirus_NikolSourire_NikolBankbio_NikolLepiege_NikolJournée_Maladies_Rares_NikolHello_NikolEuropapark_NikolDeviner_NikolDefense_immu_Nikol

photo credits:

Valentine Labouheure

Drawing credits:

Violaine Leroy

Nicolas Bottereau

10 July 2018|Events, unclassified|

Cleft Lip and Cleft Palate Day

“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.

 

Dr Grollemund

15 June 2018|Events, unclassified|

Rare Disease Day 2018

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):

  • France 3 Alsace :

12/13 of February 28

19/20 of February 28

 

Photo Credits:

Heidy B-Photo

Claire Edel

Christelle Olivès

François Stockart

5 March 2018|Events, unclassified|

RARENET participates to Rare Disease Day 2018

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!

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26 January 2018|Events|

Café-débat: « Rare : maladies et science »

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.

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7 February 2018|Events|

Our volunteer François Stockart interviewed by France 3

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).

Nouveau dossier (47)

Photo Credits: Gérard Brauer

25 January 2018|Events|

Portrait: Dr. Sophie Jung

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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. »

21 December 2017|unclassified|

18/12/2017: Preview of the film Wonder at the UGC Ciné Cité Strasbourg

 

Wonder_(film)

 

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.

15 December 2017|Events|

Symposium on enamel Anomalies: The photo Gallery

On the 8th 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

13 December 2017|Events|