Nurture relationships with the patient community
What we commit to
We will continue to have transparent, structured and impactful dialogue with patients and patient organisations in rare diseases throughout the patient journey and the medicine lifecycle, focusing on patient benefits, sustainability and societal impact. We will respect the patient organisations’ voices and independence.
We commit to acknowledging and addressing further the needs of caregivers as they play a crucial role in patient care. We will co-create educational materials, facilitate access to support networks and ensure caregiver voices are heard.
What we have done so far
Sobi interacts with people living with rare diseases, caregivers and patient organisations based on integrity, transparency, trust and mutual respect. Sobi strives to apply patient centricity in all its ways of working and throughout the medicine’s life cycle to develop solutions that are truly patient led.
Sobi supports connectedness so that people living with rare diseases, caregivers and patient organisations can connect with the community and access relevant information and resources, to support timely diagnosis, optimal treatment and living well with their condition.1
Sobi respects the independence of patient organisations in the way they operate. We do not ask to be the sole funder of an organisation or any of its programmes. We only work with organisations that are reputable, typically non-profit and organised with the intent of being a representative body on behalf of disease or condition. We encourage a multi-funding approach to supporting organisations and initiatives.
The patient community is Sobi’s most important stakeholder. Dialogue is conducted on a regular basis to ascertain that Sobi understands the interests, needs and views of the patient community, and that decisions made and actions taken are made in respect of the patient community and their human rights.
Measurement
We will measure impact through:
- Number of contact points with patient communities
Involvement
The Sobi departments involved are:
- Patient Engagement
- Environment Sustainability and Governance
- Compliance
- Legal
- Medical (depending on project)
References:
- Sobi. Patient Advocacy. Available at: https://www.sobi.com/canada/en/our-patients/patient-advocacy.