Rare Diseases International Advocacy Actions:

RDI has been advocating since 2017 for rare diseases to be recognised in relevant bodies of the United Nations

World Health Organization

Non Communicable Diseases

Human Rights

  • Rare Disease Contribution to Report on Health and Sustainable Development Goals from the Human Rights Approach (OHCHR) SDGs and Health
  • Submitted with the NGO Committee for Rare Diseases at Human Rights Council
    38th Session, June 18 – July 6, 2018 in Geneva.
  • More information on NGO Committee for Rare Diseases website

Official Written Statement

  • The Human Rights of People living with a Rare Disease
    (based on Contribution to report on Health and SDGs by OHCHR)
  • Submitted with Thalassaemia International Federation, Agrenska Foundation and
    International Federation for Hydrocephalus and Spina Bifida
  • Presented at Human Rights Council 38th Session, June 18 – July 6, 2018 in Geneva

Disability

  • Rare Disease Contribution to Report of Special Rapporteur on the Right of People with Disabilities on the right of persons with disabilities to the highest attainable standard of health, on March 30, 2018
  • Submitted with NGO Committee for Rare Diseases
  • More information on NGO Committee for Rare Diseases website
  • Paloma Tejada, Director of RDI, attended the Expert group meeting to inform the report on 15 & 16 May at the United National Office of Geneva)
  • Report to be presented by Special Rapporteur, Catalina Devandas, at 73rd UN General Assembly, Third Committee, October 2018

Oral Statement at Conference of States parties to Convention on the Rights of
People with disabilities in New York – June 2018
Video of the Statement on NGO Committee for Rare Diseases website