Advocacy and Global Partnerships
Building partnerships, raising awareness and creating global connections
The Rare Care Centre advocacy for children and families living with rare and undiagnosed diseases (RUD) operates on several levels:
- individually to address unmet needs
- systemically for long term change within and between services and sectors, and
- internationally to ensure broader recognition and improved outcomes for children and their families.
Through a local collaboration, the Rare Care Centre co-hosted the Parliamentary Friends of People with Rare and Undiagnosed Diseases Hope in Clinical Trials Day.
This event provided an opportunity for the rare disease community, world leading researchers, clinicians and stakeholders, to come together and create new partnerships and advocate for innovation and change across the rare disease clinical trial landscape.
Our team are collectively affiliated with over 50 rare disease organisations through committee, advisory board, working group and taskforce positions, and the Rare Care Centre has established a significant number of global partnerships.
The Rare Care Centre has partnered with aligned organisations including:
The Centre also provides expertise representation on global initiatives, such as the Solve-RD project.
The Centre undertakes a broad scope of projects including:
- contributing to national guidelines for rare disease
- providing consultation and expertise internationally
- developing health system digital solutions and
- driving the establishment of a Global Nursing Network.
Top image: Dr Gareth Baynam, Rare Care Centre Medical Director, addressing a Centre event. Rare Care Centre Program Manager Sue Baker and Clinical Nuse Specialist Sian Gannon.