Last Tuesday, November 7, the Hall of Lost Steps of the Extremadura Assembly inaugurated the traveling exhibition ‘Expression of Hope’. The exhibition, which aims to give visibility to people and family members with rare diseases, can be seen until the 17th of this month.
This initiative is part of the program of the same name whose objective is that people affected by Lysosomal Storage Diseases (LSD) have the opportunity to raise awareness in society about rare genetic diseases.
In this way, ‘Expression of Hope’ brings together a selection of works, photographs and paintings, created by people with LSD from all over the world and of any age, as well as caregivers, friends and family of those affected.
Through the exhibition, “the aim is to make the problem known, promote the positive image of people with rare diseases and awaken the most creative side of those affected, caregivers, friends and families, allowing them to transmit, through art, their feelings of hope and the experience of living with one of these diseases”, as indicated by the Assembly of Extremadura.
The Minister of Health and Social Policies, José María Vergeles, participated in the opening ceremony; the first vice president of the Assembly of Extremadura, José Andrés Mendo; the director of Sanofi Genzyme, Francisco Vivar, and the delegate of the Spanish Federation of Rare Diseases (Feder) in Extremadura, Modesto Díez.
Vergeles, in his speech, highlighted that the visibility achieved with events of this type is important for two reasons, because “the associations of affected people and the public authorities must be partners in the early diagnosis of these diseases,” so that they do not It takes years to diagnose, and to invest in research.
For his part, Mendo explained that people affected with LSD, through the exhibition, “show us their experiences or the way they deal with their daily lives.” Likewise, he stated that the Assembly, by hosting the exhibition, not only tries to make visible and raise awareness, but also to “demand solutions” and give voice “to those who must be exceptional protagonists today.”
Vivar wanted to focus his statement on the role that Extremadura is playing in relation to rare diseases. “Extremadura was ahead of most of the autonomies to have a comprehensive plan for the treatment of rare diseases, and was even ahead of the national strategy,” he said, adding that the “associative movement of patients has been very active for some time.” a long time and now you can see its fruits.”
Finally, Díez referred to people who live with a rare disease. “One in every 2,000,” said Feder’s delegate, pointing out “that they must wait an average of five years to obtain a diagnosis and another five years to receive treatment.”
With ‘Expression of Hope’, “artistic development becomes a tool to fight rare diseases”, increasing the visibility and normalization of the image of these people with rare diseases and “in this way favoring social mobilization and serving to families as a formula to face the illness with which they live.”