RDI Webinars

RDI organises Webinars to consult with its Members and other stakeholders

Webinars will be held in English (unless stated otherwise on the invitation)

Past Webinars

Global Commission to End the Diagnostic Odyssey for Children with Rare Diseases

This webinar, held on October 19th, 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 is due to release in their report due in February 2019.

You can read a summary of the draft Recommendations here.

Webinar to discuss the legal incorporation of RDI and overall Action Plan for 2018

On Monday 23 April, 2:00pm – 3:30pm, 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 be the opportunity to discuss with Members, RDI’s 2018 Action Plan in view to its adoption at the Membership Meeting in Vienna.

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:

https://www.rareconnect.org/topics/story/2297/tell-us-what-your-think-of-rdis-action-plan.html

 

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:

https://www.rareconnect.org/topics/questions/2117/did-you-miss-the-rdi-by-laws-qa-webinar.html



 
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