The HEALTH BOX SWISS MADE, created by ELA Suisse, contains 20 surgical masks, 1 hydroalcoholic solution and 2 mask cases. To produce this health kit, ELA Suisse has enlisted the help of three Swiss companies sensitive to ELA’s cause: Distillerie Louis Morand & Cie for the hydroalcoholic solution, Amyna3 forRead More →

Myriam Lienhard, Yan, Arnaud and Didier Défago It was on the occasion of the 2020 Family Weekend that Myriam Lienhard (President of ELA Switzerland) presented Didier Défago (patron of ELA) with the title of Honorary Member of ELA Switzerland. From the moment he met Yan and Arnaud at the firstRead More →

From 9 to 11 August 2019, the families of ELA Switzerland met at the Hotel Cailler in Charmey (canton of Fribourg) for a recreational stay.On Friday evening, the 60 or so participants were welcomed by the President of ELA Switzerland, Myriam Lienhard. Saturday morning was devoted to parents’ meeting, whichRead More →

En mémoire de leur petite Noémie, emportée par la maladie de Krabbe, la famille Lordet organise depuis 2003 l’événement Noémie’s Hope Benefit Concert. Cette année, le concert a eu lieu le 4 mai 2019 au Théâtre Baarburg (canton de Zoug) avec le soutien de l’École Internationale de Zoug et Lucerne.Read More →

The 11th ELA Suisse Family Weekend took place from August 10 to 12 at the Hotel Cailler in Charmey (canton of Friborg). After taking possession of their room, the families found themselves in a good mood and conviviality to share the evening meal. A meeting dedicated to parents was heldRead More →

It was with a new idea, designed especially for families, that the third edition of ’Tout Schuss pour ELA’ took place on March 3 in the resort of Morgins (canton of Valais). A small, timed giant (petit géant chronométré), a toboggan run, and blind skiing,, are some of the eventsRead More →

Providing smiles to children with a rare disease through motorsport is the goal of Rally for Smile. For its fourth edition, the initiator of the event, Pierre-André Terrettaz and his committee have chosen to support ELA Switzerland and provide families with a unique and extraordinary day. On August 25, 2018,Read More →