Patient Community
At Recordati Rare Diseases, we focus on the few – those affected by rare diseases. We believe that every single patient has the right to the best possible treatment. Patients with rare diseases are our top priority. They are at the core of our planning, our thinking and our actions.
You will often hear us refer to “The Patient Community” as a way to recognise a group of individuals who share similar health experiences or conditions and come together to provide mutual support, share knowledge, and advocate for better care.
These communities consist of people living with rare diseases, their families and caregivers as well as patients advocate, all with the common goal of improving health outcomes and quality of life for those affected by rare diseases.
For us, patient centricity represents a partnership with the patient community, ensuring that their voices are integral to creating effective, patient-aligned healthcare solutions. This enables us to prioritize, understand and address the patient community needs, preferences, and experiences. This approach ultimately aims to improve overall health outcomes by aligning our medicines with what patients truly need.
We aim to partner with the rare disease community, ensuring exceptional experiences, meaningful outcomes and value for all stakeholders. Our work is centred around patient community needs throughout the medicine’s lifecycle, from drug development to healthcare delivery to develop patient-led solutions.
We actively support and engage with patient organisations globally, in line with policies. Integrating patient perspectives, especially in early research, is vital to aligning future treatments with their needs.
At Recordati Rare Diseases, we are committed to putting patients at the heart of everything we do. That’s why we have created our Patient Community Charter – our promise to listen, collaborate, and create meaningful and valuable impact for the rare disease community. Download the Charter to learn how we engage with the patient community as trusted partners, ensuring their voices shape our work every step of the way.
We have developed this in co-creation with members of a variety of different patient organisations and with our EMEA, LAC and Global teams. During 2025 we plan to extend the charter for our US business.
Shining a light on the burden of a rare disease like Cushing’s syndrome*
This is Cushing is an award-winning* global awareness campaign which aims to spread education on Cushing’s syndrome. The campaign was designed together with the award-winning photographer Stefano Schirato and Federico II University of Naples Full Professors of Endocrinology, Annamaria Colao and Rosario Pivonello, to capture a moment in time of someone living with Cushing’s syndrome.
Cushing’s syndrome is a rare endocrine disorder caused by a chronic exposure to excessive levels of cortisol affecting less than 1 in 10,000 people in the European Union, which is equivalent to fewer than 51,000 patients. The disease is associated with significant morbidity and mortality due to cardiovascular and metabolic complications. In addition to the physical features, psychiatric manifestations are also a significant part of the disease which drastically affect patients’ quality of life.
Patient Partnership Index 2024
The Recordati Rare Diseases team were awarded finalist, silver and gold status for 3 different projects developed in partnership with patient groups as part of the Patient Partnership Index (PPI) 2024.
The PPI recognises and evaluates collaborative projects between the pharmaceutical industry and patient groups, providing an excellent opportunity for reflection and feedback on patient partnership.
Judging Comments
“This was one of the strongest entries reviewed by judges in 2024… impressed by the way in which a relatively simple idea from a carer was recognised as having significant potential.”
Hear from Martin, Living with Acromegaly
