What we do
SHOUT is an ally for patient advisory groups, empowering them to create meaningful, systemic change for individuals living with challenging diseases. SHOUT liaises between patient advisory groups and other support organisations as well as the pharmaceutical and healthcare industries.
Lobbying to raise awareness of the challenges of living with rare conditions in order to help shape healthcare policy and resource allocation in ways that benefit patients.
Collaborating with people living with rare conditions to gather valuable insights on their needs, lived experiences, and preferences.
Creating and sharing information to engage with various stakeholders to promote the interests of those living with rare conditions, thereby ensuring that their voices are heard and considered in decision-making processes.
Creating and facilitating awareness campaigns, information, planning and implementation of strategies that focus on highlighting the needs of people living with rare conditions.