Read the Unite4Rare Annual Impact Summary 2026
The figures presented are based on cross-functional and cross-geography Sobi metrics collection, in accordance with Unite4Rare co-created KPIs.
The latest Unite4Rare Annual Impact Summary showcases how collaboration with patients, caregivers and patient organisations contributes to meaningful progress across the rare disease community.
Stockholm, October 2026 – Sobi has published its Unite4Rare Annual Impact Summary 2026, highlighting the achievements, partnerships and initiatives that demonstrate its ongoing commitment to meaningful patient engagement.
Built around four strategic pillars - Connect, Nurture, Collaborate and Innovate - Unite4Rare reflects Sobi's approach to embedding patient perspectives throughout its activities, from clinical development and education to innovative solutions and access to treatment.
The 2026 summary highlights achievements across all four pillars:
Engagement with 229 patient organisations, 43 Patient Council meetings involving 111 community members, and patient input heard in 80% of new protocols.
Support for 164 new expert patients and the development of 580 educational materials and projects, alongside more than one million digitally trackable views, visits, downloads and other indicators.
Co-creation of 191 materials, programmes and events, alongside 33 shared decision-making solutions and three new real-world evidence studies designed with patients or involving patient organisations.
Development of 25 innovative initiatives, solutions and devices, alongside 23 awareness campaigns.
These achievements reflect collaboration across Sobi's functions and geographies, together with patient communities and other stakeholders.
The summary also highlights examples of how meaningful patient engagement can influence decisions and improve experiences.
During the co-design of a rare kidney disease clinical trial, patient perspectives helped challenge the requirement for four kidney biopsies. The protocol was subsequently revised to require three, reducing the burden of study participation.
Another example is Sobi's contribution to the World Federation of Haemophilia (WFH) Humanitarian Aid Programme. Since the programme began, more than 22,800 people have been reported treated, supported by the donation of one billion international units of factor replacement therapies.
In Trinidad and Tobago, the programme has also helped strengthen access to preventive treatment and supported collaboration with healthcare professionals and patient organisations to build local expertise and more sustainable care.
These examples illustrate how listening to patient communities can inform practical decisions, support access to care and address unmet needs.
In 2026, Unite4Rare received the Made with Patients Award, recognising its systematic approach to meaningful patient engagement and collaboration with patients and caregivers.
Sobi was also ranked No. 1 in rare diseases for the second consecutive year in the PatientView 2025/2026 Rare Diseases report, based on feedback from 502 patient organisations across 63 countries.
The company achieved the top ranking in six areas: patient centricity, patient group relationships, services beyond the pill, patient information, access to medicines and integrity.
Through Unite4Rare, Sobi continues to work with patients, caregivers, patient organisations and healthcare stakeholders to understand unmet needs, strengthen partnerships and develop solutions that reflect the experiences of people living with rare diseases.
The Annual Impact Summary illustrates that meaningful patient engagement is both measurable and deeply human - combining evidence of progress with the experiences and perspectives that give this work its purpose.
The figures presented are based on cross-functional and cross-geography Sobi metrics collection, in accordance with Unite4Rare co-created KPIs.
Source: Unite4Rare Annual Impact Summary 2026, NP-55117, October 2026.
We are a global biopharma company unlocking the potential of breakthrough innovations, transforming everyday life for people living with rare diseases.
Our therapies are concentrated within the areas of Haematology, Immunology and Specialty Care.
We contribute to societies by improving access to treatment of rare diseases.
Here we present our most recent press releases, stories, news articles, and images.
Find out more about our business and financial performance.
Every day, we work actively to find better ways to understand and meet patient needs.