"Mind the Patient": the New Patient Advocacy Project

IBSA Italy, with a long history of putting patients and their needs at the center, further strengthens this commitment by aiming for open and constructive dialogue with all entities that provide daily support to patients, families, and caregivers. Patient associations are vital points of reference for those facing chronic and degenerative diseases, and their involvement in therapeutic decisions is essential to improving healthcare.

Mind the patient – from listening to care aims to raise awareness on overlooked needs, such as difficulties in accessing the most appropriate treatments, and to promote awareness-raising projects that can help improve patients' quality of life. A fundamental aspect of patient advocacy is precisely this: creating a support network that goes beyond medical care, recognizing the importance of empathetic listening and inclusive health policies.

At the same time, the project aims to generate an internal culture of advocacy, raising awareness among company teams of the importance of being more sensitive to patients' needs, not only from a therapeutic point of view, but also from a human and social perspective.

FOCUS ON OSTEOARTICULAR CONDITIONS

The first event, held on April 8th, focused on the musculoskeletal area, addressing osteoarthritis, one of the most common joint diseases, characterized by pain, stiffness, and limited movement. The disease, which significantly impacts patients' quality of life, is often underestimated, with symptoms like morning stiffness, pain during specific activities, and joint cracking not being recognized in a timely manner. This delay in diagnosis can severely compromise the treatment journey. Therefore, events like "Mind the Patient" are crucial for raising public awareness and encouraging a collective reflection on the importance of early diagnosis, timely treatment, and pain management.

During the event, sector experts and representatives of patient associations discussed these topics. Among the participants were Silvia Tonolo, President of ANMAR ODV (National Rheumatic Disease Patients Association), Maria Grazia Pisu, President of Alomar (Regional Rheumatic Disease Patients Association), Mario Vetrano, Associate Professor of Physical Medicine and Rehabilitation at the University of Rome Sapienza, and Andrea Reggiani, Co-founder of ANFI (National Association of Interventional Physiatry).

UROGYNECOLOGICAL FOCUS

The second event was held on December 1st and was dedicated to the urogynecology area, which is very important for the company, as it closely affects people's intimate sphere and has a profound impact on their daily well-being.

During the event, various urogynecological conditions were examined from a clinical perspective, including interstitial cystitis, pelvic pain, and neurogenic bladder, conditions that are often poorly recognized, leading to delays in diagnosis that can compromise the course of treatment. The discussion then moved on to the role of patient associations in raising awareness and promoting more inclusive treatment pathways, with a look at Europe to present new recommendations that promote a multidisciplinary approach and the creation of centers of expertise that put the patient at the center of the treatment pathway. Lastly, a former patient shared her firsthand experience, talking about the daily challenges and difficulties associated with the disease, drawing attention to three key issues: listening, closeness, and genuine understanding.

The talk was moderated by Radio24 journalist Nicoletta Carbone and involved the participation of Loredana Nasta, Present of AICI Onlus and member of the eUROGEN board, Alessandro Giammò, Head of the Neuro-Urology Unit at the Città della Salute e della Scienza University Hospital in Torino, Claudia Gatti, Medical Director at the UOC of Pediatric Surgery and Head of the Spina Bifida Center of Parma; member of the Scientific Committee of ASBI, Antonella Ermigiotti, former patient and representative of the Palinuro Association (Patients Free from Urothelial Neoplasms).

With the "Mind the Patient" project, IBSA Italy reaffirms its commitment to attentive and responsible listening to patients, promoting continuous and constructive dialogue that leads to concrete and increasingly personalized solutions. This approach represents a fundamental step toward more human-centered medicine, prioritizing the needs of those living with a chronic disease and improving access to appropriate and innovative treatments.

Watch the live stream of the two events at the following links:

• Mind the Patient - Dolore Osteoarticolare Day
• Mind the Patient - Uro-Ginecology Day