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
- Inspirational Speech delivered by Dr Rüdiger Krech, Director, Universal Health Coverage and Health Systems, Office of the Assistant Director-General, World Health Organization at the European Conference on Rare Diseases & Orphan Products (Vienna, 11 May 2018). Read the speech here.
- Statement by Dr Tedros Adhanom Ghebreyesus, WHO Director-General (February 2018)
- Statement by Dr Tedros Adhanom Ghebreyesus, candidate to the position of WHO Director-General (February 2017)
- Response to the open consultation on the Draft Concept Note towards WHO’s 13th General Programme of Work 2019–2023 (October 2017)
- Response to the open consultation on the Draft 13th General Programme of Work 2019–2023 (November 2017)
- Oral Statement on Rare Diseases at WHO 71st World Health Assembly (May 23, 2018)
- Submitted with Thalassaemia International Federation, World Federation of Hemophilia, International Alliance of Patients’ Organisations and March of Dimes. Read the article and watch the video
- RDI and EURORDIS-Rare Diseases Europe met with Dr Tedros, Director General of the WHO, to discuss future collaboration (18 March 2019). Read more here.
Universal Health Coverage (UHC)
- Speech (minute 1:13:00) by Durhane Wong-Rieger, Chair of RDI, at the Universal Health Coverage Day, an event organised by the Group of Friends of UHC (Member States supporting this cause at the United Nations). (12 December 2018)
- Call for inclusion of rare diseases in the Political Declaration on UHC at the Second High Level Event of the NGO Committee for Rare Diseases at the United Nations in New York. (21 February 2019) More information here.
Non Communicable Diseases
- 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.
- 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 of the Special Rapporteur on the Rights of Persons with Disabilities
- Oral Statement at Conference of States parties to Convention on the Rights of People with disabilities in New York – June 2018. Video available here.