Strategies and action plans
- Australian Government, National Strategic Action Plan for Rare Diseases (February 2020).
- Canadian Organization for Rare Disorders, Canada’s Rare Disease Strategy (May 2015).
Reports, statements, and proposals
- EURORDIS-Rare Diseases Europe, Position Paper: Achieving Holistic Person-Centred Care to Leave No One Behind (April 2019).
- EURORDIS-Rare Diseases Europe, Recommendations from the Rare 2030 Foresight Study (February 2021).
- Genetic Alliance UK, Good Diagnosis: Improving the experiences of diagnosis for people with rare conditions (February 2022).
- The McKell Institute, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases (October 2019).
- Rare Diseases International, Five Proposals on Global Networking to Strengthen Health Systems for People Living with a Rare Disease [document currently in draft form, personal communication].
- United Nations, Addressing the challenges of persons living with a rare disease and their families (December 2021).
Education frameworks
- Royal College of Physicians and Surgeons of Canada, CanMEDS (2015).
- European Union of Medical Specialists, Syllabus for residents and trainees in Rare and Undiagnosed Diseases (December 2020).
- Human Genetics Society of Australasia, Core Capabilities in Genetics & Genomics for Medical Graduates (April 2022).
- Royal Australian College of General Practitioners, RACGP 2022 Curriculum core competency framework (2022).
