Whenever we have occasion we become a showcase to send you all the news related to rare diseases, because we believe that making them known is key to fighting them.
I want to present the documentary titled 'Rare but not invisible', a project to give visibility to rare diseases from the young Malaga scientific outsourcing company Sombradoble, which has the support of the University of Malaga, the Andalucía Emprende Foundation and the CIBERER research center network.
It is considered a 'rare disease' to those that affect less than 5 people in 10,000. It seems little, but if we look together they affect 3 million people in Spain and 7 percent of the world's population. It is believed that there are between five thousand and eight thousand rare diseases, which causes great difficulties and a delay in diagnosis, one of the main concerns of patients and families.
The documentary, which lasts an hour, has been possible thanks to crowdfunding and manages to make visible the story of eight people who have a rare disease. How is your day to day, the difficulties you face and the explanation of the doctors about each of them.
It is important that we collaborate in giving visibility to rare diseases. Family members and patients are very strong to bring them to light and make progress towards research that makes it possible to develop treatments.
