ROME (ITALPRESS) – On the occasion of World Rare Disease Day 2025, which coincides, as it does every year, with the last day of February, Sanofi is presenting its new awareness campaign on this issue, #CallHerYourName.The campaign aims to bring to the public’s attention the importance of greater knowledge and awareness of rare diseases and the impact that each disease has on those who live with them and their families and caregivers, promoting language that is respectful and free of prejudice, but also far from those myths and stereotypes that take away humanity from the life experience of the individual person. A message that will accompany the awareness and information activities on rare diseases promoted by Sanofi throughout 2025, from the world day to the individual days dedicated to some rare lysosomal and hematological diseases.In Italy, more than 2 million people live with a rare disease, facing a myriad of small and large daily challenges related to late diagnosis and complexity in the management of the disease.For the #ChiamalePerNome campaign, a video has been created that will be available on Sanofi Italy’s Instagram, Linkedin and Facebook channels from Friday, February 28, on the occasion of World Rare Disease Day, which focuses precisely on the importance of language and word choice when talking about rare diseases. Every person with a rare disease has a name, a story and a voice that deserve to be known and heard.That is why they should not be assigned any additional “label” that emphasizes or amplifies their value or intends to elicit “compassion. “Through evocative storytelling, the campaign emphasizes the urgency of early and accurate identification of rare diseases so that no patient is left without answers.In addition, with sensitivity, the video highlights how empathy for each person living with a disease, even more so if it is rare, also and above all passes through language that respects his or her dignity without being laden with pity or, even worse, using warlike terms.”We are proud to manifest again this year, through a new awareness campaign to the general public, our commitment of more than four decades in the field of rare diseases,” said Marcello Cattani, President and CEO of Sanofi Italy and Malta. “A commitment that is manifested not only through our expertise and support to the scientific and patient community, but also through information and communication activities, which ensure that our message can live well beyond the February 28 Day. We have specific expertise in lysosomal storage diseases and several rare blood disorders, where we have a dozen clinical research projects in phase 2 and 3, and beyond. In our day-to-day work, we stand alongside patients, associations and the institutional world to help bridge the legislative and care gap for people with rare diseases, the obstacles in access to innovative therapies and early diagnosis. “There are between 7,000 and 8,000 known rare diseases today, many of them highly disabling and lacking in resolving therapies. Among them, a group of particular relevance is lysosomal storage diseases, inherited metabolic disorders of genetic origin that can also seriously impair the function of vital organs and apparatuses and occur predominantly in the first years of life. If not adequately and promptly treated, they can profoundly affect patients’ quality of life and, in some cases, even their very survival. Major diseases belonging to this group include Gaucher disease, Anderson-Fabry disease, Pompe disease, Mucopolysaccharidosis type I (MPS I) and acid sphingomyelinase deficiency (ASMD). Early diagnosis is a key factor in countering the progression of these diseases, but currently work is still being done so that expanded neonatal screening for these diseases is implemented uniformly throughout the country.Rare blood diseases represent another area of particular complexity, with diseases that can have serious and unpredictable consequences. Among these, Acquired Thrombotic Thrombocytopenic Purpura (aTTP) is a severe autoimmune coagulation disease that can manifest itself with acute and sudden events, putting vital organs such as the heart, brain, and kidneys at risk. In these conditions, early intervention by emergency-medicine is crucial to avoid potentially fatal outcomes and ensure effective treatment. Early recognition of symptoms and access to specialized care can make a difference in the management of the condition, reducing the risk of complications and improving patients’ life expectancy.Sanofi has been at the forefront of research and development of innovative therapies for rare diseases for more than four decades, with a particular focus on lysosomal storage diseases.Starting in the 1980s, thanks to the pioneering work of the American biotech Genzyme-acquired by Sanofi in 2011-the first enzyme replacement therapies were developed, which represented a breakthrough in the management of these diseases. This commitment has been consolidated over time through collaboration with physicians, healthcare institutions and patient associations, fostering the transformation of scientific innovation into increasingly effective treatments. In recent years, the company has also expanded its field of action to rare blood diseases, introducing in Italy the first monoclonal antibody for the treatment of Acquired Thrombotic Thrombocytopenic Purpura (aTTP). Sanofi thus continues to invest in the research and development of new therapeutic solutions, with the goal of improving the quality of life of people living with a rare disease and their families. In its research pipeline, Sanofi has about a dozen molecules in late-stage clinical development in diseases such as immune thrombocytopenia, childhood-onset Pompe disease, Fabry disease and Gaucher type 3 disease, autoimmune hemolytic anemia by hot antibodies, alpha-1 antitrypsin deficiency, and hemophilia A and B.
– credit photo Esperia Advocacy -(ITALPRESS).
