Introducing Unite4Rare

Our Long-Standing Commitment to Patients & Caregivers

Unite4Rare is Sobi’s long-standing commitment to the patient and caregiver community. Building on Sobi’s longstanding heritage of meaningful patient engagement, it takes it to the next level by clearly outlining all our responsibilities, what has been done so far and how we will measure progress into the future.

Development of Unite4Rare

“We created Unite4Rare to include the expertise of patients and caregivers in our work. Working together is essential for medical progress, particularly in rare diseases, and this initiative will focus our thinking.” said Lydia Abad-Franch, Head of R&D and Medical Affairs and Chief Medical Officer.

A genuine co-creation, Unite4Rare was developed by internationally recognised patient community leaders and senior leadership within Sobi. The diverse make-up of the development team ensured for a collaborative approach that truly reflects the voices of the rare disease community.

Working in partnership

Taking nearly two years from conception to launch, Unite4Rare was created with an external taskforce of patient representatives and carers in partnership with an internal think tank of Sobi leaders. Together, they reflected on the broader landscape and scope of this commitment, and explored ways to make a meaningful difference to all those impacted by rare disease.

In November 2023, the group had the opportunity to gather for a workshop in Zurich, where the initiative took shape. It was here that the four pillars - Connect, Nurture, Innovate and Collaborate - were established, laying out not just pathways but concrete goals for more effective partnerships with the patient community.

Karen Durrant, a Unite4Rare taskforce member, paediatric nurse, and founder and president of the Autoi Inflammatory Alliance said: "We were truly heard, treated as equals, and embraced as collaborators. As a patient advocate and parent, being listened to in this way is deeply meaningful. The inclusion of such a diverse group representing rare diseases beyond our own area brings a comprehensive perspective that addresses many facets of the rare disease community."

The importance of accountability

The Unite4Rare taskforce also explored ways to embed the four pillars and commitments into Sobi’s overall strategy and the hearts and minds of our people. Importantly, the Unite4Rare commitments will not change and so will continually underpin how we, at Sobi, approach meeting the needs of patients.

Accountability is key to ensure that we continually innovate and collaborate in new ways to address the challenges faced by those living with rare diseases. Unite4Rare is a company-wide initiative and every Sobi department will play a role in measuring, reporting, and tracking progress toward the commitments made. Furthermore, each year, members of the Sobi leadership team and
the Patient Community will come together to review achievements and set new goals, ensuring we continue to move forward with purpose.

This aspect of the initiative is unique, said Denis Costello, Director of CML Advocates Network and a taskforce member: “Unite4Rare goes beyond words - it’s crucial that progress per the key performance indicators (KPIs) outlined are monitored and built upon to show commitment to active growth, and that the promises made to the patient community are not hollow.” 

Giampiero Marra VP, EU Region Head of Medical and Patient Engagement, added: “Upholding accountability is a top priority; moving forwards, we envision Unite4Rare to be our ‘North Star’, guiding all our current and future activities. We are excited to embark on this journey, and we hope you share our enthusiasm for supporting Unite4Rare.”

Unite4Rare represents a significant step forward in Sobi’s commitment to the rare disease community. By fostering collaboration, innovation, and accountability, we aim to make a meaningful difference in the lives of patients and caregivers. We invite you to join us on this journey and support Unite4Rare in its mission to improve the lives of those affected by rare diseases.

Read more about Unite4Rare here