| European Commissioner for health Stella Kyriakades' on Europ... | 22 Mar 2021 | 1616432208 |
| Terkel Andersen calls for a new European Framework for rare diseases | 22 Mar 2021 | 1616432208 |
| Rebecca Skarberg explains why the clock is ticking for people with rare diseases | 22 Mar 2021 | 1616432208 |
| The recommendations of the Rare 2030 Foresight Study - and how we got there | 22 Mar 2021 | 1616432208 |
| Kateřina Konečná MEP, on the role the Czech Presidency ha... | 22 Mar 2021 | 1616432208 |
| Milan Macek: "Absence of action will revert us back" | 22 Mar 2021 | 1616432208 |
| Cristian-Silviu Buşoi on the European Parliament's role on rare diseases | 22 Mar 2021 | 1616432208 |
| Yann Le Cam sets the case for a new European framework for rare diseases | 22 Mar 2021 | 1616432208 |
| Jan Blatný prioritises European solidarity for rare diseases | 22 Mar 2021 | 1616432208 |
| Andrzej Ryś, European Commission, on the Rare 2030 Recommendations | 22 Mar 2021 | 1616432208 |
| Rare 2030 recommendations in focus | 22 Mar 2021 | 1616432208 |
| Frédérique Ries, MEP, on the Rare 2030 recommendations | 22 Mar 2021 | 1616432208 |
| EURORDIS Black Pearl Awards 2021 - David Maria Sassoli, Pres... | 22 Mar 2021 | 1616432208 |
| EURORDIS Lifetime Achievement Award 2021 - Milan Macek | 22 Mar 2021 | 1616432208 |
| EURORDIS Company Award for Health Technology 2021 - Epihunter | 22 Mar 2021 | 1616432208 |
| EURORDIS Photo Award 2021 recipients announcement | 22 Mar 2021 | 1616432208 |
| EURORDIS Company Award for Patient Engagement 2021 - Takeda | 22 Mar 2021 | 1616432208 |
| EURORDIS Company Award for Innovation 2021 - Orchard Therapeutics | 22 Mar 2021 | 1616432208 |
| EURORDIS European RD Leadership Award 2021 - Victoria Hedley... | 22 Mar 2021 | 1616432208 |
| EURORDIS Black Pearl Award 2021 - Dominique Sturz talking ab... | 22 Mar 2021 | 1616432208 |
| EURORDIS Young Patient Advocate Award 2021 - Rachele Somaschini | 22 Mar 2021 | 1616432208 |
| EURORDIS Written Media Award 2021 - Ana Ilić | 22 Mar 2021 | 1616432208 |
| EURORDIS Visual and Audio Media Award 2021 - Noémie Desquiotz-Sunnen | 22 Mar 2021 | 1616432208 |
| EURORDIS Scientific Award 2021 - Alain Hovnanian | 22 Mar 2021 | 1616432208 |
| EURORDIS Policy Maker Award 2021 - Kateřina Konečná | 22 Mar 2021 | 1616432208 |
| EURORDIS Volunteer Award 2021 - Ingunn Westerheim and Rebecca Tvedt Skarbeg | 22 Mar 2021 | 1616432208 |
| Avril Daly's opening speech - EURORDIS Black Pearl Awards 2021 | 22 Mar 2021 | 1616432208 |
| EURORDIS Member Award 2021- AKU Society | 22 Mar 2021 | 1616432208 |
| Impact video - Black Pearl Awards 2021 | 22 Mar 2021 | 1616432208 |
| EURORDIS Black Pearl Awards 2021 | 22 Mar 2021 | 1616432208 |
| Rare 2030 Final Policy Conference - Feb 23, 2021 | 22 Mar 2021 | 1616432208 |
| Vaccination campaigns in Europe - François Houÿez | 22 Mar 2021 | 1616432208 |
| S.A.R. la Grande-Duchesse de Luxembourg - RARE DISEASE DAY 2021 message | 22 Mar 2021 | 1616432208 |
| Her Majesty Margareta of Romania Speech Rare Diseases Day 2021 | 22 Mar 2021 | 1616432208 |
| Rare 2030 Foresight Study | 22 Mar 2021 | 1616432208 |
| Rare 2030 - David Maria Sassoli speech | 22 Mar 2021 | 1616432208 |
| "In ten years' time...": an open letter from the next genera... | 22 Mar 2021 | 1616432208 |
| EURORDIS Black Pearl Awards 2021 | Sammy Basso | 22 Mar 2021 | 1616432208 |
| A Final Update on the Rare 2030 Foresight Study | 22 Mar 2021 | 1616432208 |
| EURORDIS' take on the approval and development of COVID19 vaccines | 22 Mar 2021 | 1616432208 |
| HTx project 2020 - European Project - Introduction | 22 Mar 2021 | 1616432208 |
| FROM POSSIBLE TO ACCESSIBLE? Launch event of RARE IMPACT report | 22 Mar 2021 | 1616432208 |
| Rare 2030 ERN event | 22 Mar 2021 | 1616432208 |
| Rare Barometer: How to interpret results and communicate abo... | 22 Mar 2021 | 1616432208 |
| Good Practice - ERN Skin | 22 Mar 2021 | 1616432208 |
| Webinar: EURORDIS Covid-19 survey – Full results and recommendations | 22 Mar 2021 | 1616432208 |
| Webinar: A data strategy for the European Reference Networks | 22 Mar 2021 | 1616432208 |
| Allison Watson on being an ePAG advocate | 22 Mar 2021 | 1616432208 |
| Dorica Dan on being an ePAG advocate | 22 Mar 2021 | 1616432208 |
| EURORDIS Black Pearl Awards 2022 | Sammy Basso | 27 May 2021 | 1622152893 |
| EURORDIS Webinar: Deep dive into integration of ERNs (Part I) | 12 Jul 2021 | 1626127318 |
| EURORDIS Webinar: #30millionreasons campaign update | 21 Sep 2021 | 1632261702 |
| RareConnect.org: BINGO study webinar | 30 Sep 2021 | 1633039629 |
| Ethical Aspects of Clinical Trials | 7 Oct 2021 | 1633644113 |
| Deep-dive into integration of ERNs : Care Pathways | 15 Oct 2021 | 1634335320 |
| EURORDIS webinar on the Rare2030 survey findings | 21 Oct 2021 | 1634853714 |
| Yann le Cam on the importance of ePAGs | 9 Nov 2021 | 1636498920 |
| Webinar: Update on the COVID-19 pandemic in Europe with special focus on PLWRD | 22 Nov 2021 | 1637622111 |
| Europe’s Action Plan for Rare Diseases debated in the European Parliament | 8 Dec 2021 | 1639004519 |
| Special message from EURORDIS Chief Executive Officer, Yann Le Cam | 19 Jan 2022 | 1642633321 |
| MEP David Lega | 31 Jan 2022 | 1643670132 |
| Francesco Cannadoro | 1 Feb 2022 | 1643756536 |
| Noah Higón | 1 Feb 2022 | 1643756536 |
| Milica & Noa | 1 Feb 2022 | 1643756536 |
| EURORDIS BLACK PEARL 2022 CEREMONY | 10 Feb 2022 | 1644534111 |
| “A Conversation with Dystonia" | 10 Feb 2022 | 1644534111 |
| EURORDIS Black Pearl Company Award for Patient Engagement - SMA NBS Alliance | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Young Patient Advocate Award - Danielle Drachmann | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Volunteer Award - Graham Slater | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Social Media Award - Noa and Milica Savic | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Scientific Award - Prof. Franz Schaefer | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Policy Maker Award - Prof. Hans-Georg Eichler | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Members Award - Childhood Cancer Intern... | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Media Award - EwenLife | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Lifetime Achievement Award - Dr. William Gahl | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Leadership Award - Dr. Anne-Sophie Lapointe | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Company Award for Innovation - Lysogene | 18 Feb 2022 | 1645225332 |
| EURORDIS Black Pearl Company Award for Health Technology - Aparito | 18 Feb 2022 | 1645225332 |
| Yann Le Cam's message of solidarity with people with rare di... | 3 Mar 2022 | 1646348526 |
| Launch of the Rare Barometer Diagnosis Survey: strengthen yo... | 21 Mar 2022 | 1647903721 |
| ePAG exchange of Good Practices: Patient-clinician feedback session | 30 Mar 2022 | 1648677731 |
| Peer-learning pills: Development of patient reported outcome measures (PROMs) | 30 Mar 2022 | 1648677731 |
| ePAG Good Practices: Clinical Practice Guideline development | 30 Mar 2022 | 1648677731 |
| European Reference Networks and European Advocacy Patient Groups - 101 | 12 Apr 2022 | 1649800910 |
| ePAG exchange of Good Practices: Designing Surveys | 17 May 2022 | 1652824910 |
| Introducing the 11th European Conference on Rare Diseases & Orphan Products | 27 May 2022 | 1653688900 |
| Helene Dollfus on attending ECRD2022, the largest patient-le... | 21 Jun 2022 | 1655848937 |
| Ruediger Gatermann on attending ECRD2022, the largest patien... | 21 Jun 2022 | 1655848937 |
| AMEQUIS ePAG Webinar | 1 Jul 2022 | 1656712926 |
| IRDiRC REACT Orphan Drug Development Guidebook | 4 Jul 2022 | 1656972121 |
| Open Academy - Why do you, as a patient advocate, should participate? | 20 Sep 2022 | 1663711332 |
| Open Academy - Why is empowering patient advocates so important? | 20 Sep 2022 | 1663711332 |
| Webinar: The Fundamentals of International Advocacy for Rare Diseases | 22 Sep 2022 | 1663884134 |
| Open Academy - "An opportunity not to be missed' by Marta Campabadal | 23 Sep 2022 | 1663970538 |
| ERN 5-Yr Evaluation through the Patient-Lens Webinar | 29 Sep 2022 | 1664488937 |
| ePAG Exchange of Good Practices _ VASCERN Flowchart | 29 Sep 2022 | 1664488937 |
| Improving access for rare diseases | 13 Oct 2022 | 1665698536 |
| Engaging with stakeholders for rare diseases | 13 Oct 2022 | 1665698536 |
| Empowering people with rare diseases | 13 Oct 2022 | 1665698536 |
| Advocating rare diseases as a public health priority | 13 Oct 2022 | 1665698536 |
| Patient-managed registries - Julián Isla - Open Academy | 13 Oct 2022 | 1665698536 |
| Connecting patients to ERN Working Group update | 17 Oct 2022 | 1666044145 |
| ePAG Clinical practice guidelines Working Group + AMEQUIS task force update | 17 Oct 2022 | 1666044145 |
| ePAG Research and Registries Working Group update | 17 Oct 2022 | 1666044145 |
| ePAG Training Working Group | 17 Oct 2022 | 1666044145 |
| Engaging stakeholders for rare diseases | 18 Nov 2022 | 1668812541 |
| Advocating rare diseases as a public health priority | 18 Nov 2022 | 1668812541 |
| Empowering people with rare diseases | 21 Nov 2022 | 1669041335 |
| Improving access for rare diseases | 21 Nov 2022 | 1669071726 |
| Terkel Andersen, Immediate Past President, on his legacy at EURORDIS | 28 Nov 2022 | 1669676531 |
| Avril Daly, President, on her inspiration at EURORDIS | 28 Nov 2022 | 1669676531 |
| Geske Wehr, General Secretary, on how open-mindedness makes for successful teams | 1 Dec 2022 | 1669935745 |
| Dorica Dan, Vice President, on the future of integrated care | 1 Dec 2022 | 1669935745 |
| Avril Daly, President, on the importance of diversity | 1 Dec 2022 | 1669935745 |
| Avril Daly, President, on what she hopes for her legacy at EURORDIS | 1 Dec 2022 | 1669935745 |
| Maria Montefusco, Vice President, on the diverse community r... | 1 Dec 2022 | 1669935745 |
| Alain Cornet, Treasurer, on how EURORDIS can remain collecte... | 1 Dec 2022 | 1669935745 |
| Simona Bellagambi, Deputy General Secretary, on building a s... | 13 Dec 2022 | 1670972532 |
| Raising awareness about the needs of people with rare diseases | 20 Dec 2022 | 1671577326 |
| Patient Partnership Working Group meeting | 21 Dec 2022 | 1671663727 |
| New HTA Regulation and the new EU Cooperation on HTA | 12 Jan 2023 | 1673564526 |
| EURORDIS Photo Award 2023: A message from Marcus Bleasdale | 18 Jan 2023 | 1674082934 |
| Michelle Muscat - EURORDIS Black Pearl Awards 2023 Honorary Patron | 13 Feb 2023 | 1676329323 |
| MEP Tilly Metz - EURORDIS Black Pearl Awards 2023 Honorary Patron | 13 Feb 2023 | 1676329323 |
| Ambassador Willem van de Voorde - EURORDIS Black Pearl Award... | 13 Feb 2023 | 1676329323 |
| Alternate Minister of Health of Greece Dr. Mina Gaga - EUROR... | 16 Feb 2023 | 1676588519 |
| Minister Vandenbroucke - EURORDIS Black Pearl Awards 2023 Honorary Patron | 16 Feb 2023 | 1676588519 |
| Black Pearl Awards 2023 | 1 Mar 2023 | 1677711719 |
| ePAG Exchange of Good Practices: EURO-NMD case study | 29 Mar 2023 | 1680127321 |
| ePAG Exchange of Good Practices: PaedCan case study | 29 Mar 2023 | 1680127321 |
| ePAG Exchange of Good Practices: ERNICA case study | 29 Mar 2023 | 1680127321 |
| ePAG Exchange of Good Practices: EpiCARE case study | 29 Mar 2023 | 1680127321 |
| Patient partnership webinars: EPICARE case study | 4 Apr 2023 | 1680645719 |
| Patient partnership webinars: ERNICA case study | 4 Apr 2023 | 1680645719 |
| Patient partnership webinars: EURO-NMD case study | 4 Apr 2023 | 1680645719 |
| Patient partnership webinars: PaedCan case study | 4 Apr 2023 | 1680645719 |
| Patient Representatives Involvement in the ERN Evaluation we... | 27 Apr 2023 | 1682632916 |
| EURORDIS Partnership Webinars: Rare Disease National Network... | 5 May 2023 | 1683324120 |
| Open Academy - Why you should enrol in our trainings | 9 Oct 2023 | 1696888932 |
| Open Academy - Why you should enrol in our trainings | 9 Oct 2023 | 1696888932 |
| Sharing main results and key learnings 2023 ePAG Steering Co... | 16 Nov 2023 | 1700175745 |
| Yann Le Cam Opening remarks at ePAG Steering Committee Annual Meeting | 16 Nov 2023 | 1700175745 |
| MEP Tilly Metz - EURORDIS Black Pearl Awards 2024 Honorary Patron | 1 Feb 2024 | 1706828534 |
| Michelle Muscat - EURORDIS Black Pearl Awards 2024 Honorary Patron | 1 Feb 2024 | 1706828534 |
| H.E. Willem Van de Voorde - EURORDIS Black Pearl Awards 2024 Honorary Patron | 20 Feb 2024 | 1708470132 |
| H.E. Edita Hrdá - EURORDIS Black Pearl Awards 2024 Honorary Patron | 20 Feb 2024 | 1708470132 |
| 13th EURORDIS Black Pearl Awards | 28 Feb 2024 | 1709161333 |
| MEP Brando Benifei - EURORDIS Black Pearl Awards 2024 Honorary Patron | 6 Mar 2024 | 1709766141 |
| Championing the Rare | 7 Mar 2024 | 1709852536 |
| Patient Partnership Pills: ERN NMD Rehabilitation Summer Sch... | 14 Mar 2024 | 1710457340 |
| EURORDIS Patient Partnership Webinar - Good Practices - Educational Programmes | 14 Mar 2024 | 1710457340 |
| Ethics and Informed Consent Meetup 14/03/24 | 15 Mar 2024 | 1710543737 |
| OA24 MRD Webinar #2 recording | 25 Mar 2024 | 1711407742 |
| Patient Partnership in Healthcare Webinar - Patient Journeys | 25 Mar 2024 | 1711407742 |
| Access to Treatments | 10 Apr 2024 | 1712786538 |
| In Conversation: Virginie Bros-Facer and Avril Daly | 19 Apr 2024 | 1713564145 |
| In Conversation: Virginie Bros-Facer and Avril Daly | 21 Apr 2024 | 1713736935 |
| Rare Barometer Webinar on the results of the NBS survey | 2 May 2024 | 1714687336 |
| Mental Health Podcast | 9 May 2024 | 1715292142 |
| Highly Specialised Care Podcast | 9 May 2024 | 1715292142 |
| ERDERA 101 Podcast | 9 May 2024 | 1715292142 |
| Eurordis Wellbeing Partnership Network | 13 May 2024 | 1715637737 |
| Eurordis on Mental Health | 13 May 2024 | 1715637737 |
| Patient Partnership Webinar: Go East! Project by ERN Lung | 31 May 2024 | 1717192947 |
| Ayça Şahin's story and what our survey reveals about long diagnostic journeys | 3 Jun 2024 | 1717452144 |
| Positively styling life with lymphedema: Nicole Faccio | 3 Jun 2024 | 1717452144 |
| The impact of an ultra-rare condition: Fatal Familial Insomnia | 3 Jun 2024 | 1717452144 |
| EURACAN Registry: Developing a long-term vision together | 3 Jun 2024 | 1717452144 |
| Leif's story | 3 Jun 2024 | 1717452144 |
| It's Rare Disease Day 2024! | 3 Jun 2024 | 1717452144 |
| Natalia's story | 3 Jun 2024 | 1717452144 |
| Jay's story | 3 Jun 2024 | 1717452144 |
| Katie's story | 3 Jun 2024 | 1717452144 |
| Dan's story | 3 Jun 2024 | 1717452144 |
| Mental wellbeing: Hands-on support for the community | 3 Jun 2024 | 1717452144 |
| Deeann's story | 3 Jun 2024 | 1717452144 |
| Bor's story | 3 Jun 2024 | 1717452144 |
| Becky's story | 3 Jun 2024 | 1717452144 |
| Amber's story | 3 Jun 2024 | 1717452144 |
| Gene therapies: Promoting development and expanding access | 3 Jun 2024 | 1717452144 |
| Action within reach: Shaping the future at ECRD 2024 | 3 Jun 2024 | 1717452144 |
| Giving back to the community | 3 Jun 2024 | 1717452144 |
| Gene therapies: Why are they important? | 3 Jun 2024 | 1717452144 |
| Should more diseases be screened for at birth? | 3 Jun 2024 | 1717452144 |
| No two are alike | 3 Jun 2024 | 1717452144 |
| Assessing the true value of new health technologies | 3 Jun 2024 | 1717452144 |
| Finding New Uses for Existing Medicines | 3 Jun 2024 | 1717452144 |
| Transforming Healthcare through Sharing Data | 3 Jun 2024 | 1717452144 |
| The effort to make rare disease medicines less rare | 3 Jun 2024 | 1717452144 |
| EU Action Plan | 5 Jun 2024 | 1717624948 |
| Simplifying access to cross-border healthcare: a Czech proposal | 12 Jun 2024 | 1718229780 |
| Young Advocates | 25 Jun 2024 | 1719352952 |
| Webinar on Approaches to Evaluate Evidence on Rare Disease Guidelines | 26 Jun 2024 | 1719439350 |
| Marina Zapparoli Manzoni on the power of finding and building a community | 27 Jun 2024 | 1719525750 |
| Patient Partnership Webinar: The Patient Experience - partne... | 1 Jul 2024 | 1719871351 |
| Healthcare Webinar: Added Value of Patient Involvement in th... | 17 Jul 2024 | 1721253788 |
| Young advocate Jane Velkovski on accessibility and making a ... | 25 Jul 2024 | 1721944951 |
| Patient Partnership Webinar - Unlocking ERN Potential: Disease Specific Measures | 25 Jul 2024 | 1721944951 |
| 10 Minutes With Rhiannon Walls: Paralympian Sofie Skoubo | 9 Aug 2024 | 1723240957 |
| 10 Minutes With Rhiannon Walls: Paralympian Sofie Skoubo, Part 2 | 26 Aug 2024 | 1724709755 |
| Putting Patient Journeys into Action | 12 Sep 2024 | 1726178549 |
| Zainab Alani on diagnostic delays, intersectionality, and ed... | 26 Sep 2024 | 1727388148 |
| Open Academy Schools - Apply now! | 9 Oct 2024 | 1728511353 |
| Open Academy Schools - Apply now! | 9 Oct 2024 | 1728511353 |
| Rare Parenting | 9 Oct 2024 | 1728511353 |
| Miriam Wilms on navigating rare disease healthcare as both a... | 31 Oct 2024 | 1730415758 |
| ERDERA | 13 Nov 2024 | 1731538962 |
| Patient Partnership Hub - Demo Webinar | 15 Nov 2024 | 1731711754 |
| Dani's story | 20 Nov 2024 | 1732143753 |
| Kelly du Plessis on fighting for her son and rare disease ad... | 28 Nov 2024 | 1732834955 |
| JARDIN: The Joint Action integrating ERNs into national health systems | 6 Dec 2024 | 1733450563 |
| JARDIN: The Joint Action integrating ERNs into national health systems | 6 Dec 2024 | 1733450563 |
| David's story | 7 Dec 2024 | 1733536959 |
| ERNs | 12 Dec 2024 | 1733968951 |
| Emma and Nellie's story | 19 Dec 2024 | 1734573753 |
| Julián Isla on how AI can revolutionise rare disease healthcare | 20 Dec 2024 | 1734660150 |
| Fatimah's story | 3 Jan 2025 | 1735869748 |
| Khim's story | 16 Jan 2025 | 1736992966 |
| Khim's story | 16 Jan 2025 | 1736992966 |
| Rare Disease Day: Sophia's story | 30 Jan 2025 | 1738202559 |
| Webinar – Rare Barometer Diagnosis Survey Results – 30 January, 2:30-4:30pm CET | 1 Feb 2025 | 1738375354 |
| Rare Disease Day: Sushimita's story | 7 Feb 2025 | 1738893760 |
| Rare Disease Day: Sushimita's story | 7 Feb 2025 | 1738893760 |