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



 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases