1. EU Research on rare diseases. https://ec.europa.eu/info/research-and-innovation/research-area/health-research-and-innovation/rare-diseases_en. Accessed 20 Dec 2021.
2. Commission of the European Communities. Communication from the commission to the European Parliament, the council, the European economic and social committee and the Committee of the Regions on rare diseases. Europe's Challenges; 2008. https://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf. Accessed 20 Dec 2021.
3. Shire. Rare disease impact report: insights from patients and the medical community. Jersey: Shire; 2013. https://www.academia.edu/18842593/Rare_Disease_Impact_Report_Insights_from_patients_and_the_medical_community. Accessed 25 May 2021.
4. Genetic Alliance UK. Rare Experience 2020. The lived experiences of people affected by genetic, rare and undiagnosed conditions. Genetic Alliance UK; 2020. https://rareexperience2020.geneticalliance.org.uk/wp-content/uploads/2020/12/Rare-Experience-2020-Report-.pdf. Accessed 25 May 2020.
5. Anderson M, Elliott EJ, Zurynski YJ. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8:22.