A messages from the global rare disease community open the presentation on the call for a UN Resolution to Addressing the Challenges of Persons Living with Rare Diseases and their Families.
00:00 Testimonies: Persons Living with a Rare Disease and their Families
8:53 Civil Society Partners and facts about rare diseases
10:31 Why a UN Resolution on Persons Living with a Rare Disease
22:49 Call to Action
Co-hosted with EURORDIS to mark UHC Day 2020
Pre-recorded conference session at the European Conference on Rare Diseases 14 May 2020.
Held on 27 April 2020, this webinar is an introduction to the WHO Collaborative Global Network for Rare Diseases and the role patient organisations can play in this ambitious collaboration between RDI and the WHO. Download the presentation.
This webinar, held on 14 December 2018, provided information about the activities and programmes planned for 2019. Download the presentation.
This webinar, held on 19 October 2018, provided an introduction to RDI members on the Global Commission to End the Diagnostic Odyssey for Children. The webinar was an opportunity to collect best practices from countries as well as review a set of recommendations that the Global Commission was due to release in February 2019.
You can read a summary of the draft Recommendations here.
On Monday 23 April 2018, Zoe Alahouzou, Deputy to Chief Executive Officer of EURORDIS and Paloma Tejada, Director of Rare Diseases International, held a webinar to go over the Statutes of the new organisation and the details of the agreement with EURORDIS for continued support. This was also an opportunity to discuss with Members, RDI’s 2018 Action Plan in view to its adoption at the Membership Meeting in Vienna.
9 October 2017
RDI organised a webinar to discuss practical ways to put rare diseases on the radar of the United Nations as part of a step-wise approach toward a United Nations Resolution on Rare Diseases.
Yann Le Cam, CEO of EURORDIS and Member of the RDI Council, gave an overview of the United Nations systems and how it works. He also described the actions that will be undertaken by the NGO Committee for Rare Diseases in 2018 to give visibility to rare diseases on the UN 2030Agenda.
28 patient reps attended the webinar, asked questions and commented on the proposed strategy and activities for next year. Together they explored ways in which they could help by reaching out to their governments through their Ministries or Permanent Representations in New York.
Wednesday, 19 October 2017 from 4PM to 5PM (CEST)
This webinar was an opportunity for participants to give their opinion on the draft RDI 2017 Action Plan. Yann Le Cam, member of the RDI Council and CEO of EURORDIS-Rare Diseases Europe, and Paloma Tejada, Senior Manager of RDI, presented the draft Action Plan.