EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.

Visit https://www.eurordis.org/ for more information.

Training Session 3: EHDS and Secondary Data
1:15:17
Training Session 3: EHDS and Secondary Data
Training Session 2: EHDS and Primary Data
1:14:14
Training Session 2: EHDS and Primary Data
Training Session 1: How does the EHDS work?
1:27:37
Training Session 1: How does the EHDS work?
10 Minutes With Rhiannon Walls: Accessibility & The Arts
11:20
10 Minutes With Rhiannon Walls: Accessibility & The Arts
The Project Planning Toolkit
1:45
The Project Planning Toolkit
Nick Sireau on patient-driven scientific breakthroughs and drug repurposing
33:12
Nick Sireau on patient-driven scientific breakthroughs and drug repurposing
Assessing the Implementation of Patient Partnership in the European Reference Networks
1:45
Assessing the Implementation of Patient Partnership in the European Reference Networks
Rare Disease Day: Noah's story
8:08
Rare Disease Day: Noah's story
Rare Disease Day: Eden's story
3:50
Rare Disease Day: Eden's story
Webinar – Rare Barometer Daily Life Survey Results – 13 February, 17.00-18.30 CET
1:15:05
Webinar – Rare Barometer Daily Life Survey Results – 13 February, 17.00-18.30 CET
Rare Disease Day: Huy's story
5:00
Rare Disease Day: Huy's story
Rare Disease Day: Sushmita's story
3:27
Rare Disease Day: Sushmita's story
Webinar – Rare Barometer Diagnosis Survey Results – 30 January, 2:30-4:30pm CET
2:03:07
Webinar – Rare Barometer Diagnosis Survey Results – 30 January, 2:30-4:30pm CET
Rare Disease Day: Sophia's story
3:39
Rare Disease Day: Sophia's story
Rare Disease Day: Khim's story
5:55
Rare Disease Day: Khim's story
Rare Disease Day: Fatimah's story
4:37
Rare Disease Day: Fatimah's story
Julián Isla on how AI can revolutionise rare disease healthcare
29:58
Julián Isla on how AI can revolutionise rare disease healthcare
Rare Disease Day: Emma and Nellie's story
3:29
Rare Disease Day: Emma and Nellie's story
10 Minutes With Rhiannon Walls: The European Reference Networks
11:59
10 Minutes With Rhiannon Walls: The European Reference Networks
Rare Disease Day: David's story
3:43
Rare Disease Day: David's story
ERNs on Air: JARDIN - The Joint Action integrating ERNs into national health systems
19:11
ERNs on Air: JARDIN - The Joint Action integrating ERNs into national health systems
Kelly du Plessis on fighting for her son and rare disease advocacy in South Africa
29:53
Kelly du Plessis on fighting for her son and rare disease advocacy in South Africa
Rare Disease Day: Dani's story
5:06
Rare Disease Day: Dani's story
Patient Partnership Hub - Demo Webinar
26:43
Patient Partnership Hub - Demo Webinar
10 Minutes With Rhiannon Walls: ERDERA
12:18
10 Minutes With Rhiannon Walls: ERDERA
Miriam Wilms on navigating rare disease healthcare as both a mother and a specialist surgeon
28:32
Miriam Wilms on navigating rare disease healthcare as both a mother and a specialist surgeon
Open Academy Schools - Apply now!
2:25
Open Academy Schools - Apply now!
Open Academy Schools - Apply now!
2:14
Open Academy Schools - Apply now!
10 Minutes With Rhiannon Walls: Rare Parenting
11:31
10 Minutes With Rhiannon Walls: Rare Parenting
Zainab Alani on diagnostic delays, intersectionality, and educational gaps in rare disease medicine
29:31
Zainab Alani on diagnostic delays, intersectionality, and educational gaps in rare disease medicine