04 March 2016: A public information session in Dijon.
Rare Diseases Day is observed annually in late February with the objective of raising awareness in the public domain as well as among health and scientific authorities about the magnitude of the challenges to be confronted in improving management of rare diseases. The AnDDI-Rares network, which brings together all of the key players involved in the management of developmental diseases with or without intellectual disability, planned and organised public information sessions for this day, at the regional level.
For this first edition, the following topics were discussed at the Salle Desvosges, Dijon, with 70 persons present :
-What are developmental disorders ?
-What part does the AnDDI-Rares network play ?
-Diagnostic delay in developmental disorders
-The introduction of high-throughput sequencing into the diagnosis of developmental diseases
28 February 2017: Rare like everyone else, international rare diseases day in Dijon and the rare diseases village
By joining forces, the local rare diseases associations, in partnership with FHU TRANSLAD, wished to demonstrate that, apart from their specific areas of focus and their diversity, they are all part of a single family with common challenges, energies and hopes.
In the setting of a “rare diseases village”, these associations, both large and small, joined forces with other key players in the field of rare diseases, to share information and updates, to connect and to show a united front with a single identity, on Tuesday 28 February 2017 from 14h to 17h, at Place Darcy, Dijon : sensory workshops, wheelchair obstacle courses, Handi’Chien dogs, pet therapy, make-up, shiatsu, music therapy, voyage to the centre of the gene, dream-catchers… were all on offer at this festive afternoon event.
« Rare like everyone else ». The event concluded with a lecture followed by a round-table discussion, in the Devosge lecture hall, with various medical and social professionals the field of rare diseases, on the topic “What is the treatment of the future for persons with rare diseases?” It was attended by 70 persons.
28 February 2018: An opportunity to discuss diversity, disability and the perception of others from a younger perspective...
Film-debate on the film “Wonder”
A film-debate for secondary school classes was hosted at Cap-Vert cinema, on the film “Wonder” by Stephen Chbosky (released in cinemas on 20/12/2017), which tells the story of a young boy of 10 with a rare disease (Treacher Collins syndrome), which is characterised by prominent distinctive facial features with no intellectual disability. He attends school for the first time in his neighbourhood and is very keen to reach out to his classmates and be accepted for who he is. Every member of his family, each of his new classmates and every resident of the entire village, will come face-to-face with his own limitations, generosity of spirit or narrow thinking. The film is based on the best-selling novel “Wonder” by R. J. Palacio.
The film distributor (Metropolitan Films) in partnership with ANNA, the support association for persons with congenital aesthetic deformity, also provided an educational package so that teachers can use the classroom setting to further explore the themes raised by the book and the film: tolerance, bullying at school, the opinions of others, acceptance of differences, natural curiosity, etc. A dedicated site has been set up. It can be accessed via the link : http://www.wonder-scolaire.fr/
This film examines the acceptance of others with their differences and the caring relationship among the pupils.
A multidisciplinary team from FHU TRANSLAD was on hand at the end of the session to join in a discussion, also co-ordinated by journalist, Loïc Ballet.
Links to view the film trailer
« Ecoute donc voir… (Listen, then see...)» social intervention theatre tour
In collaboration with Sanofi-Genzyme laboratory, the AnDDI-rares rare diseases health network hosted this play in Dijon on 28 February 2018 at the Fontaine d’Ouche theatre.
In this one-character play, Raphaël Thiéry, who actually suffers with a rare disease, animates the members of the audience, moving them to a sense of tragedy, pity, outrage. He is an actor, storyteller, reciter, entertainer and even dances. Through his acting, he gives a better understanding of how to cope with disability, find one’s way out of the shadows and so reaffirm a life beset by entangled voices in one's head and open up these voices to the world and to others. This amusing, delightful as well as deeply moving play is a wonderful message of hope, an ode to life ... This play is an original work by the Compagnie L’Estaminet Rouge and was written and directed by Patrick Grégoire.
The event commenced at 19h with a friendly buffet reception hosted with patients’ associations in attendance. Over 200 persons attended the theatrical performance which was later followed by an hour-long discussion, led by the actor and the FHU TRANSLAD teams.
The difference makes you grow... theme of the rare disease day 2019
The International Day of Rare Diseases took place on February 28th around the world. The Filière Nationale de Santé AnDDI-Rare reissued a tour throughout France of free discussion shows for the general public. The objective is to invite everyone to open their eyes to rare diseases in a caring way.
In Dijon, the "My name is Nemo" theatre-debate was presented on the evening of 26 February to more than 160 people, in partnership with the rare disease reference centres. It was about a father at the bedside of his hospitalized son. To overcome the boredom, he decides to tell his son a story: the family saga. This odyssey criss-crosses Europe, crosses time and fascinates the son to the point that he forgets to die. This show full of tenderness and humour is Marko Meyerl's first solo show.
The very moving play was followed by a period of discussion with the actor, Professor Christel Thauvin and the philosopher Pierre Ancet. Questions around the family heritages that we want / can / must accept or refuse could be discussed and the evening was an opportunity for everyone to take the time to look in the suitcase that each generation passes on to the next to take a step back, and why not live their life to themselves.
A new format for the International Day for Rare Diseases, March 10, 2020, very popular
This new day was aimed at a public of college students. Organized within the framework of the original tour of shows-debates of the AnDDI-Rares health sector, two highlights punctuated this initiative in Dijon. About a hundred students came to the Fontaine d'Ouche gymnasium to participate in workshops: armchair soccer, DNA extraction, rare disease quizzes, sensory workshops, and handi'dogs.
They were joined by 100 other students after lunch for a theater-debate around the play "Samuel. Me? I have no problem" at the Fontaine d'Ouche theater. The exchanges that followed the play, of great quality, were very rich. This play has been performed in 9 other cities in France.