What is Unite4Rare?
Unite4Rare is Sobi’s long-standing commitment to the patient and caregiver community, outlining all of our responsibilities, what has been done so far and how we will measure progress into the future.
Co-created by internationally renowned patient community leaders and senior leadership within Sobi, Unite4Rare builds on Sobi’s history of specialised expertise in rare diseases and patient engagement, taking it to the next level. It demonstrates our dedication to making a positive impact by clearly outlining what patients and caregivers can expect from us.
Meaningful patient engagement in rare diseases is inherent to Sobi’s DNA. We have a long history in ensuring people living with rare diseases and their families can receive the life-saving care and therapies they need, and that their voices are heard.
This remains central to the vision of Sobi today: to be recognised as a global leader in providing innovative treatments that transform lives for individuals with rare diseases.
Unite4Rare is underpinned by Sobi’s five core values that reflect our approach to meeting the needs of people living with rare diseases who are otherwise often overlooked: Care, Ambition, Ownership, Urgency, Partnership. These values are inherent to our pursuit of creating a patient-partnered culture across the company.
Our Pillars
Unite4Rare centres on four pillars, which are intrinsically linked:
1: Connect
We connect deeply with patient communities worldwide, including those that are typically underserved.
- Disease awareness connect patient organisations with communities
- Patients as equal contributors connect patients with leadership
- Access programmes connect patients with treatments
- Clinical trials connect patients with clinical development
- Humanitarian programmes connect patients to better healthcare
2: Nurture
We partner with truly representative patient organisations in a sustainable, ethical way that helps them thrive.
- Capability building nurture capabilities
- Trusted education source nurture education
- Patient engagement in acquisitions nurture patient driven models
- Continuous and transparent communication nurture relationships with the patient community
3: Collaborate
Our partnerships facilitate meaningful and inclusive involvement of patients in medicine development and the patient’s journey.
- Define and deliver on shared objectives collaborate and co-create
- Informed decision making (IDM) collaborate to improve dialogue and outcomes
- Patient engagement and experience data collaborate on real world evidence
4: Innovate
We create an environment that enables engagement with patients through innovation and forward-looking solutions.
- Innovate disease awareness campaigns innovate to spread awareness
- Value added services innovate to improve products and outcomes
Partnering with patients
We extend our appreciation and thanks to the patient community leaders at all levels involved in co-creating Unite4Rare. As we strive to implement the commitments year by year, we will continue to engage with patient community leaders in order to measure our progress carefully. We recognise that these ongoing, valued partnerships and dialogues are vital to ensuring optimal outcomes for people living with rare diseases and their families.
The ongoing journey of Unite4Rare
- Annually report on metrics allocated to each commitment to monitor and stay accountable to goals
- Revise the ‘What we have done so far’ section on a regular basis
- Members of Sobi leadership team and patient community to convene annually to review progress and strategise how to build upon commitments