RDI advocates to advance equity and social inclusion for Persons Living with a Rare Disease and their families.
The challenges of Persons Living with a Rare Disease go far beyond health.
Across the globe, our community faces multiple forms of discrimination and barriers to full participation in society.
Children living with a rare disease struggle to be integrated into education systems and encounter barriers at every stage of schooling.
Families and Persons Living with a Rare Disease face challenges maintaining decent work and have a greater risk of impoverishment due to the increased costs of care for a rare disease.
Women experience gender inequality and stigma as Persons Living with a Rare Disease. And mothers often have a greater responsibility for caregiving within the home.
- RDI UHC Day Statement on Health Equity, 13 December 2021
- Policy event ‘The Right to Health: The Rare Disease Perspective’ at Campus Biotech, Geneva, 10 February 2017
- Submission to the UN OHCHR consultation on the Report on Health and Sustainable Development Goals from the Human Rights Approach. Submitted with the NGO Committee for Rare Diseases in February 2018.
- Official Joint Statement on the ‘Right to health in rare diseases’ at Human Rights Council 38th Session, June 18 – July 6, 2018 in Geneva. Submitted by Thalassaemia International Federation, Ågrenska Foundation and International Federation for Hydrocephalus and Spina Bifida and the NGO Committee for Rare Diseases.
- Inclusion of rare diseases in the Human Rights Council Resolution on Access to medicines and vaccines in the context of the right of everyone to the enjoyment of the highest attainable standard of physical and mental health 2019.
- Inclusion of rare diseases in the Report of the UN OHCHR to the 2019 session of ECOSOC on Universal Health Coverage.
- Rare Disease Day Toolkit on Equity, 2021
- UN General Assembly Resolution on the Challenges of Persons Living with a Rare Disease and their Families.