Disease awareness

Connect patient organisations with communities

What we commit to

What we have done so far

In 2025, Sobi strengthened its commitment to connecting people living with rare diseases, their caregivers, and patient organizations into one united community. Guided by the vision of fostering collaboration and shared understanding, Sobi worked to create spaces where experiences, knowledge, and support could flow freely, helping individuals access timely information, achieve optimal care, and improve quality of life. Through continuous engagement with patient organizations, Sobi supported the establishment and growth of networks that empower communities to act together. These partnerships were built in full alignment with Sobi’s policy on healthcare interactions, ensuring transparency, integrity, and respect for all stakeholders. Connection extended beyond patient groups. 
 

Sobi engaged in open dialogue across the entire biopharmaceutical ecosystem, from healthcare professionals and advocacy leaders to government authorities, payers, and research partners. Together, these collaborations co produced meaningful solutions and resources designed to meet real needs within rare disease communities. By nurturing these relationships, Sobi helped transform isolated voices into a collective movement. The result was a stronger, more connected rare disease community — one that stands together to accelerate diagnosis, improve care, and inspire hope for everyone affected by rare conditions. 

Sobi is a long-term sponsor of:

• EURORDIS: The European rare disease organisation
• NORD: The North American rare disease organisation
• WFH: The World Federation of Hemophilia
• EHC: The European Haemophilia Consortium
• Other local patient organisations³