Advocacy and Global Partnerships
The power of partnership: a global approach
In the rare disease field, a global approach is essential, therefore the Rare Care Centre’s philosophy is "go global or go home" – to develop partnerships, resources and interventions across different countries and contexts. The Centre’s 367 partnerships and collaborations fall typically in seven categories:
- Knowledge Sharing
- Collaboration on Initiatives
- Advocacy
- Service Delivery Expansion
- Networking
- Education
- Industry Partnerships
If you would like to collaborate with us, please get in touch via emailing pch.rarecarecentre@health.wa.gov.au.
Partnership and collaboration highlights
- Parliamentary Friends of People with Rare and Undiagnosed Diseases Western Australia (Western Australia): A non-partisan forum established by Members of the Parliament of Western Australia to raise awareness of and increase liaison with people with a rare or undiagnosed diseases for parliamentarians. Collaboration on events for Clinical Trials Day 2023 and Rare Disease Day 2024.
- Rare Voices Australia (Australia): Key national partner and peak advocacy body for rare diseases in Australia. Co-creation of the Nurse Navigator Program; Co-authorship of the Recommendations for Rare Disease Health Care; Support and collaboration on variety of other knowledge exchange, policy and advocacy initiatives.
- Global Alliance for Genomics and Health (Canada): Rare Disease Community of Interest which is co-lead by Dr Tudor Groza (Rare Care Centre Data and Technical Lead). Focused on developing standardised approaches for data sharing and leveraging phenotype knowledge to improve clinical decision-making and patient management.
- Syndromes Without A Name Clinic (Wales): Sharing of models, business cases, evaluation and metrics frameworks; connection with other collaborators and creation of regular sharing forum; Collaboration on Rare Disease Patient Passport and Global Nursing Network for Rare Diseases development and implementation.
- Berlin Institute of Health (Germany): Collaboration with Human Phenotype Ontology team to ensure accurate and standardised representation of phenotypic data crucial for Rare Disease research.
Explore our partnerships further through the interactive map: