Disease awareness

Connect patient organisations with communities

What we commit to

We will continue to engage with and support rare disease patient communities via continuous dialogue with patient organisations.

Together, we aim to improve people’s understanding of diseases and knowledge of management options, and to foster accurate diagnosis.

What we have done so far

At Sobi, we support rare disease communities by engaging in a continuous dialogue with all stakeholders across the biopharmaceutical value chain.¹

In 2023, Sobi supported 14 valuable global patient organisation projects in the areas of haemophilia, lymphoma, Still’s disease, immune thrombocytopenia (ITP), gout, amyloidosis and several local initiatives that connect patient organisations with rare disease communities.²

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

Measurement

We will measure impact through:

Number of patient organisations engaged with
Number of community members reached with support projects

Involvement

The Sobi departments involved are:

Patient Engagement
Compliance
Medical
Legal (depending on project)

References:

Sobi. Annual and Sustainability Report 2022. Available at: https://www.sobi.com/sites/default/files/pr/202303312874-1.pdf.
Sobi. Disclosure of Payment to Healthcare. Available at: https://www.sobi.com/en/disclosure-payments-healthcare.
Sobi. Patient Centricity and Engagement. Available at: https://www.sobi.com/en/patient-centricity.