Sobi Ranked No. 1 for Patient Engagement in Rare Diseases for Second Consecutive Year
核心洞察
Sobi (搜索) has been ranked No. 1 in rare diseases (搜索) in the PatientView Corporate Reputation of Pharma – Rare Diseases Edition 2025/2026, marking its second consecutive year at the top.
The ranking reflects the perspectives of 502 rare disease patient organisations from 63 countries, representing close to 3 million individuals living with rare conditions.
Patient groups highlighted Sobi (搜索)'s strengths in patient centricity, patient safety, patient information, integrity, and services beyond the pill.
Sobi (搜索) has once again been recognised by patient organisations for its commitment to meaningful patient engagement, ranking No. 1 in rare diseases (搜索) in the PatientView Corporate Reputation of Pharma – Rare Diseases Edition 2025/2026 for the second consecutive year. The edition reflects the perspectives of 502 rare disease patient organisations from 63 countries, collectively representing the voices of close to 3 million individuals living with rare conditions.
The recognition places Sobi (搜索) at the top of the rare diseases (搜索) ranking, alongside a No. 1 position in the Bleeding Disorders (搜索) edition and a No. 2 ranking across all therapy areas in the global edition. "To be recognised once again by patient organisations in the PatientView Corporate Reputation of Pharma – Rare Diseases Edition is something we are both proud of and grateful for. It reflects the trust built through years of listening, open dialogue and close collaboration with patient communities around the world," said Sobi Chief Medical Officer and Head of R&D-Medical Affairs Lydia Abad-Franch.
Areas of Recognised Strength
Patient groups working with Sobi (搜索) highlighted the company's strengths across several areas that matter deeply to patient organisations, including patient centricity, patient information, patient safety, integrity, patient group relationships and services beyond the pill.
In patient-centered approach and collaboration, Sobi (搜索) ranked No. 1 in patient centricity, No. 1 in patient group relationships, No. 1 in services beyond the pill, and No. 4 in engagement in R&D. In quality and safety, the company achieved No. 1 rankings in patient safety, transparency of pricing, data and funding, and products of benefit. In access and information, Sobi ranked No. 1 in patient information, access to medicines, and integrity.
The Unite4Rare Framework
This recognition reflects the shared efforts of colleagues across Sobi (搜索) who work every day to build trusted partnerships with patient organisations. Through its global patient commitment framework Unite4Rare, the company listens to and learns from the experiences of people living with rare diseases (搜索), helping to better understand their needs and perspectives. These insights help shape the way Sobi explores new approaches, provides support and works to improve outcomes for the communities it serves.
Unite4Rare is built on four commitments: connect, nurture, collaborate and innovate, ensuring engagement is meaningful, ethical and forward-looking. Each year, a Unite4Rare Global Council, made up of patient-organisation representatives across therapy areas, reviews progress and helps shape future priorities together with Sobi (搜索).
Independent Recognition for Systematic Engagement
Sobi (搜索)'s Unite4Rare initiative has separately been named a winner of the 2026 Made with Patients Awards in the Initiatives category, hosted by Patient Focused Medicines Development (PFMD). With 242 nominations received and 21 finalists identified, the award recognises Unite4Rare for excellence in Systematic Meaningful Patient Engagement, celebrating the company's commitment to co-creating solutions in partnership with people living with rare diseases (搜索) and caregivers across the rare disease community.
Through Unite4Rare, Sobi (搜索) has developed a structured and systematic approach to patient engagement, including measurable impact indicators, transparent feedback loops and collaborative design processes. Together, these ensure that the voices, perspectives and lived experience of people living with rare diseases (搜索) are embedded at every stage of development.
"We are honoured to receive this recognition," said Donatella Decise, Global Director Patient Engagement and Patient Communications at Sobi (搜索). "Unite4Rare reflects our belief that meaningful progress is created together with patients and caregivers, as true partners shaping solutions for the rare disease community."
Giampiero Marra, Head of Global Patient Engagement and Patient Communications, added: "This award reinforces our commitment to systematically embedding the perspectives of people living with rare diseases (搜索) across all parts of our organisation. It is a proud moment for all of us at Sobi (搜索) and for the communities who inspire us every day."
The award was presented during the Patient Engagement Open Forum (PEOF) on 3 June 2026 in Sevilla, Spain.
A Call to Continued Action
Recognition like this is both an honour and a call to action. As Sobi (搜索)'s pipeline continues to evolve, so does its opportunity – and responsibility – to listen early, build trusted relationships and bring patient perspectives into the work that shapes the future of care.
"We want to bring the same quality of listening, partnership and collaboration that has brought us here to new patient groups as well and continue strengthening relationships with patient communities around the world," said Giampiero Marra, Head of Global Patient Engagement and Patient Communication at Sobi (搜索).