Human Rights and Rare Disease

• 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 – IF witht 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.