Key questions and types of input/comments sought

The Office of the UN High Commissioner for Human Rights is conducting research on the protection of the human rights of persons living with rare diseases and their families and carers. The Office would be particularly interested in receiving the following information:

1. testimonies from persons living with rare diseases and their families and carers;
2. key human rights challenges and barriers relevant to persons living with rare diseases and their families and carers, particularly in developing countries;
3. the burden of rare diseases in developing countries, particularly in Africa and Asia, preferably with information disaggregated by age, sex, gender, race, ethnicity, socio-economic status and any other relevant factors;
4. obstacles to the development of medicines, therapies, treatments and other health products relevant for rare diseases, and interventions which would help address these obstacles; and
5. examples of promising practices, together with the criteria used in evaluating them as such where possible, on how to better protect the rights of persons living with rare diseases and their families and carers, including in resource-poor settings.

Contributors are encouraged to share any resources, particularly peer-reviewed studies, which may be of relevance.