Disability and Rare Disease

• Submission to the UN Special Rapporteur on the Rights of Persons with Disabilities consultation on the report on ‘the right to the highest attainable standard of health’ (March 30, 2018). Submitted with NGO Committee for Rare Diseases. 
• Participation in the Expert Group Meeting on the right of persons with disabilities to the highest attainable standard of physical and mental health in Geneva, Switzerland on 15-16 May 2018 hosted by the UN Special Rapporteur.
• Oral Statement at Conference of States Parties to Convention on the Rights of People with Disabilities (COSP CRPD) in New York – June 2018. Video available here.
• Inclusion of rare diseases in the final Report of the Special Rapporteur on the Rights of Persons with Disabilities, October 2018.