PPI Expert Advisory Group (PPI-EAG) and Children's Research Advisory Group (CRAG)
PPI Expert Advisory Group (PPI-EAG)
This group, consisting of individuals with lived experience of rare diseases, acts as a vital link between patients and researchers, healthcare professionals, and policymakers. The PPI Expert Advisory Group provides invaluable insights and perspectives, ensuring that the diverse needs and priorities of patients are actively considered in all aspects of research, policy development, and service provision. Through their unique and invaluable contributions, the PPI Expert Advisory Group plays an indispensable role in shaping the rare disease landscape by ensuring that patient voices are heard and respected.
RAiN Children's Research Advisory Group (RAiN-CRAG)
The CRAG consists of children aged 10-17 years old who are expert advisors to the adult research team. This group serves as the voice of children, ensuring that their perspectives and needs are heard and considered in all aspects of research. By actively engaging children in the decision-making process, the advisory group fosters a sense of empowerment, enabling them to actively contribute to the development and implementation of research initiatives. The group collaborates closely with researchers, healthcare professionals, and other stakeholders to provide valuable insights into the lived experiences of children with rare diseases. Their involvement ensures that research strategies are child-centered, ethically sound, and truly reflect the unique challenges faced by this vulnerable population.