RDI organises Webinars to consult with its Members and other stakeholders
Webinars will be held in English (unless stated otherwise on the invitation)
Information & Brainstorming Webinar: Learn about the United Nations and how you can help get rare diseases on the UN Agenda
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 stepwise approach to gain a United Nations Resolution on Rare Diseases.
Yann Le Cam, Chief Executive Officer 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 (within the framework of the Sustainable Development Goals and under the motto of ‘Leave no one behind’).
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.
RDI Action Plan Q&A
Wednesday, October 19 from 4PM to 5PM (CEST)
Description: 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 Chief Executive Officer of EURORDIS-Rare Diseases Europe, and Paloma Tejada, Senior Manager of RDI, presented the draft Action Plan.
If you want to give feedback on this webinar, please go to:
RDI By-laws Q&A
Thursday, September 29 from 4.00PM to 5PM (CEST)
Description: The webinar was an opportunity for Members to ask questions, discuss and give their feedback on RDI’s Governance by commenting on the Draft By-Laws proposed by the Council.
To listen to the recording of the webinar and give your feedback on the By-laws, click on: