| | European Commissioner for health Stella Kyriakades' on Europ... | 22 Mar 2021 | 1616428608 |
| | Terkel Andersen calls for a new European Framework for rare diseases | 22 Mar 2021 | 1616428608 |
| | Rebecca Skarberg explains why the clock is ticking for people with rare diseases | 22 Mar 2021 | 1616428608 |
| | The recommendations of the Rare 2030 Foresight Study - and how we got there | 22 Mar 2021 | 1616428608 |
| | Kateřina Konečná MEP, on the role the Czech Presidency ha... | 22 Mar 2021 | 1616428608 |
| | Milan Macek: "Absence of action will revert us back" | 22 Mar 2021 | 1616428608 |
| | Cristian-Silviu Buşoi on the European Parliament's role on rare diseases | 22 Mar 2021 | 1616428608 |
| | Yann Le Cam sets the case for a new European framework for rare diseases | 22 Mar 2021 | 1616428608 |
| | Jan Blatný prioritises European solidarity for rare diseases | 22 Mar 2021 | 1616428608 |
| | Andrzej Ryś, European Commission, on the Rare 2030 Recommendations | 22 Mar 2021 | 1616428608 |
| | Rare 2030 recommendations in focus | 22 Mar 2021 | 1616428608 |
| | Frédérique Ries, MEP, on the Rare 2030 recommendations | 22 Mar 2021 | 1616428608 |
| | EURORDIS Black Pearl Awards 2021 - David Maria Sassoli, Pres... | 22 Mar 2021 | 1616428608 |
| | EURORDIS Lifetime Achievement Award 2021 - Milan Macek | 22 Mar 2021 | 1616428608 |
| | EURORDIS Company Award for Health Technology 2021 - Epihunter | 22 Mar 2021 | 1616428608 |
| | EURORDIS Photo Award 2021 recipients announcement | 22 Mar 2021 | 1616428608 |
| | EURORDIS Company Award for Patient Engagement 2021 - Takeda | 22 Mar 2021 | 1616428608 |
| | EURORDIS Company Award for Innovation 2021 - Orchard Therapeutics | 22 Mar 2021 | 1616428608 |
| | EURORDIS European RD Leadership Award 2021 - Victoria Hedley... | 22 Mar 2021 | 1616428608 |
| | EURORDIS Black Pearl Award 2021 - Dominique Sturz talking ab... | 22 Mar 2021 | 1616428608 |
| | EURORDIS Young Patient Advocate Award 2021 - Rachele Somaschini | 22 Mar 2021 | 1616428608 |
| | EURORDIS Written Media Award 2021 - Ana Ilić | 22 Mar 2021 | 1616428608 |
| | EURORDIS Visual and Audio Media Award 2021 - Noémie Desquiotz-Sunnen | 22 Mar 2021 | 1616428608 |
| | EURORDIS Scientific Award 2021 - Alain Hovnanian | 22 Mar 2021 | 1616428608 |
| | EURORDIS Policy Maker Award 2021 - Kateřina Konečná | 22 Mar 2021 | 1616428608 |
| | EURORDIS Volunteer Award 2021 - Ingunn Westerheim and Rebecca Tvedt Skarbeg | 22 Mar 2021 | 1616428608 |
| | Avril Daly's opening speech - EURORDIS Black Pearl Awards 2021 | 22 Mar 2021 | 1616428608 |
| | EURORDIS Member Award 2021- AKU Society | 22 Mar 2021 | 1616428608 |
| | Impact video - Black Pearl Awards 2021 | 22 Mar 2021 | 1616428608 |
| | EURORDIS Black Pearl Awards 2021 | 22 Mar 2021 | 1616428608 |
| | Rare 2030 Final Policy Conference - Feb 23, 2021 | 22 Mar 2021 | 1616428608 |
| | Vaccination campaigns in Europe - François Houÿez | 22 Mar 2021 | 1616428608 |
| | S.A.R. la Grande-Duchesse de Luxembourg - RARE DISEASE DAY 2021 message | 22 Mar 2021 | 1616428608 |
| | Her Majesty Margareta of Romania Speech Rare Diseases Day 2021 | 22 Mar 2021 | 1616428608 |
| | Rare 2030 Foresight Study | 22 Mar 2021 | 1616428608 |
| | Rare 2030 - David Maria Sassoli speech | 22 Mar 2021 | 1616428608 |
| | "In ten years' time...": an open letter from the next genera... | 22 Mar 2021 | 1616428608 |
| | EURORDIS Black Pearl Awards 2021 | Sammy Basso | 22 Mar 2021 | 1616428608 |
| | A Final Update on the Rare 2030 Foresight Study | 22 Mar 2021 | 1616428608 |
| | EURORDIS' take on the approval and development of COVID19 vaccines | 22 Mar 2021 | 1616428608 |
| | HTx project 2020 - European Project - Introduction | 22 Mar 2021 | 1616428608 |
| | FROM POSSIBLE TO ACCESSIBLE? Launch event of RARE IMPACT report | 22 Mar 2021 | 1616428608 |
| | Rare 2030 ERN event | 22 Mar 2021 | 1616428608 |
| | Rare Barometer: How to interpret results and communicate abo... | 22 Mar 2021 | 1616428608 |
| | Good Practice - ERN Skin | 22 Mar 2021 | 1616428608 |
| | Webinar: EURORDIS Covid-19 survey – Full results and recommendations | 22 Mar 2021 | 1616428608 |
| | Webinar: A data strategy for the European Reference Networks | 22 Mar 2021 | 1616428608 |
| | Allison Watson on being an ePAG advocate | 22 Mar 2021 | 1616428608 |
| | Dorica Dan on being an ePAG advocate | 22 Mar 2021 | 1616428608 |
| | EURORDIS Black Pearl Awards 2022 | Sammy Basso | 27 May 2021 | 1622145693 |
| | EURORDIS Webinar: Deep dive into integration of ERNs (Part I) | 12 Jul 2021 | 1626120118 |
| | EURORDIS Webinar: #30millionreasons campaign update | 21 Sep 2021 | 1632254502 |
| | RareConnect.org: BINGO study webinar | 30 Sep 2021 | 1633032429 |
| | Ethical Aspects of Clinical Trials | 7 Oct 2021 | 1633636913 |
| | Deep-dive into integration of ERNs : Care Pathways | 15 Oct 2021 | 1634328120 |
| | EURORDIS webinar on the Rare2030 survey findings | 21 Oct 2021 | 1634846514 |
| | Yann le Cam on the importance of ePAGs | 9 Nov 2021 | 1636495320 |
| | Webinar: Update on the COVID-19 pandemic in Europe with special focus on PLWRD | 22 Nov 2021 | 1637618511 |
| | Europe’s Action Plan for Rare Diseases debated in the European Parliament | 8 Dec 2021 | 1639000919 |
| | Special message from EURORDIS Chief Executive Officer, Yann Le Cam | 19 Jan 2022 | 1642629721 |
| | MEP David Lega | 31 Jan 2022 | 1643666532 |
| | Francesco Cannadoro | 1 Feb 2022 | 1643752936 |
| | Noah Higón | 1 Feb 2022 | 1643752936 |
| | Milica & Noa | 1 Feb 2022 | 1643752936 |
| | EURORDIS BLACK PEARL 2022 CEREMONY | 10 Feb 2022 | 1644530511 |
| | “A Conversation with Dystonia" | 10 Feb 2022 | 1644530511 |
| | EURORDIS Black Pearl Company Award for Patient Engagement - SMA NBS Alliance | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Young Patient Advocate Award - Danielle Drachmann | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Volunteer Award - Graham Slater | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Social Media Award - Noa and Milica Savic | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Scientific Award - Prof. Franz Schaefer | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Policy Maker Award - Prof. Hans-Georg Eichler | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Members Award - Childhood Cancer Intern... | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Media Award - EwenLife | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Lifetime Achievement Award - Dr. William Gahl | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Leadership Award - Dr. Anne-Sophie Lapointe | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Company Award for Innovation - Lysogene | 18 Feb 2022 | 1645221732 |
| | EURORDIS Black Pearl Company Award for Health Technology - Aparito | 18 Feb 2022 | 1645221732 |
| | Yann Le Cam's message of solidarity with people with rare di... | 3 Mar 2022 | 1646344926 |
| | Launch of the Rare Barometer Diagnosis Survey: strengthen yo... | 21 Mar 2022 | 1647900121 |
| | ePAG exchange of Good Practices: Patient-clinician feedback session | 30 Mar 2022 | 1648670531 |
| | Peer-learning pills: Development of patient reported outcome measures (PROMs) | 30 Mar 2022 | 1648670531 |
| | ePAG Good Practices: Clinical Practice Guideline development | 30 Mar 2022 | 1648670531 |
| | European Reference Networks and European Advocacy Patient Groups - 101 | 12 Apr 2022 | 1649793710 |
| | ePAG exchange of Good Practices: Designing Surveys | 17 May 2022 | 1652817710 |
| | Introducing the 11th European Conference on Rare Diseases & Orphan Products | 27 May 2022 | 1653681700 |
| | Helene Dollfus on attending ECRD2022, the largest patient-le... | 21 Jun 2022 | 1655841737 |
| | Ruediger Gatermann on attending ECRD2022, the largest patien... | 21 Jun 2022 | 1655841737 |
| | AMEQUIS ePAG Webinar | 1 Jul 2022 | 1656705726 |
| | IRDiRC REACT Orphan Drug Development Guidebook | 4 Jul 2022 | 1656964921 |
| | Open Academy - Why do you, as a patient advocate, should participate? | 20 Sep 2022 | 1663704132 |
| | Open Academy - Why is empowering patient advocates so important? | 20 Sep 2022 | 1663704132 |
| | Webinar: The Fundamentals of International Advocacy for Rare Diseases | 22 Sep 2022 | 1663876934 |
| | Open Academy - "An opportunity not to be missed' by Marta Campabadal | 23 Sep 2022 | 1663963338 |
| | ERN 5-Yr Evaluation through the Patient-Lens Webinar | 29 Sep 2022 | 1664481737 |
| | ePAG Exchange of Good Practices _ VASCERN Flowchart | 29 Sep 2022 | 1664481737 |
| | Improving access for rare diseases | 13 Oct 2022 | 1665691336 |
| | Engaging with stakeholders for rare diseases | 13 Oct 2022 | 1665691336 |
| | Empowering people with rare diseases | 13 Oct 2022 | 1665691336 |
| | Advocating rare diseases as a public health priority | 13 Oct 2022 | 1665691336 |
| | Patient-managed registries - Julián Isla - Open Academy | 13 Oct 2022 | 1665691336 |
| | Connecting patients to ERN Working Group update | 17 Oct 2022 | 1666036945 |
| | ePAG Clinical practice guidelines Working Group + AMEQUIS task force update | 17 Oct 2022 | 1666036945 |
| | ePAG Research and Registries Working Group update | 17 Oct 2022 | 1666036945 |
| | ePAG Training Working Group | 17 Oct 2022 | 1666036945 |
| | Engaging stakeholders for rare diseases | 18 Nov 2022 | 1668808941 |
| | Advocating rare diseases as a public health priority | 18 Nov 2022 | 1668808941 |
| | Empowering people with rare diseases | 21 Nov 2022 | 1669037735 |
| | Improving access for rare diseases | 21 Nov 2022 | 1669068126 |
| | Terkel Andersen, Immediate Past President, on his legacy at EURORDIS | 28 Nov 2022 | 1669672931 |
| | Avril Daly, President, on her inspiration at EURORDIS | 28 Nov 2022 | 1669672931 |
| | Geske Wehr, General Secretary, on how open-mindedness makes for successful teams | 1 Dec 2022 | 1669932145 |
| | Dorica Dan, Vice President, on the future of integrated care | 1 Dec 2022 | 1669932145 |
| | Avril Daly, President, on the importance of diversity | 1 Dec 2022 | 1669932145 |
| | Avril Daly, President, on what she hopes for her legacy at EURORDIS | 1 Dec 2022 | 1669932145 |
| | Maria Montefusco, Vice President, on the diverse community r... | 1 Dec 2022 | 1669932145 |
| | Alain Cornet, Treasurer, on how EURORDIS can remain collecte... | 1 Dec 2022 | 1669932145 |
| | Simona Bellagambi, Deputy General Secretary, on building a s... | 13 Dec 2022 | 1670968932 |
| | Raising awareness about the needs of people with rare diseases | 20 Dec 2022 | 1671573726 |
| | Patient Partnership Working Group meeting | 21 Dec 2022 | 1671660127 |
| | New HTA Regulation and the new EU Cooperation on HTA | 12 Jan 2023 | 1673560926 |
| | EURORDIS Photo Award 2023: A message from Marcus Bleasdale | 18 Jan 2023 | 1674079334 |
| | Michelle Muscat - EURORDIS Black Pearl Awards 2023 Honorary Patron | 13 Feb 2023 | 1676325723 |
| | MEP Tilly Metz - EURORDIS Black Pearl Awards 2023 Honorary Patron | 13 Feb 2023 | 1676325723 |
| | Ambassador Willem van de Voorde - EURORDIS Black Pearl Award... | 13 Feb 2023 | 1676325723 |
| | Alternate Minister of Health of Greece Dr. Mina Gaga - EUROR... | 16 Feb 2023 | 1676584919 |
| | Minister Vandenbroucke - EURORDIS Black Pearl Awards 2023 Honorary Patron | 16 Feb 2023 | 1676584919 |
| | Black Pearl Awards 2023 | 1 Mar 2023 | 1677708119 |
| | ePAG Exchange of Good Practices: EURO-NMD case study | 29 Mar 2023 | 1680120121 |
| | ePAG Exchange of Good Practices: PaedCan case study | 29 Mar 2023 | 1680120121 |
| | ePAG Exchange of Good Practices: ERNICA case study | 29 Mar 2023 | 1680120121 |
| | ePAG Exchange of Good Practices: EpiCARE case study | 29 Mar 2023 | 1680120121 |
| | Patient partnership webinars: EPICARE case study | 4 Apr 2023 | 1680638519 |
| | Patient partnership webinars: ERNICA case study | 4 Apr 2023 | 1680638519 |
| | Patient partnership webinars: EURO-NMD case study | 4 Apr 2023 | 1680638519 |
| | Patient partnership webinars: PaedCan case study | 4 Apr 2023 | 1680638519 |
| | Patient Representatives Involvement in the ERN Evaluation we... | 27 Apr 2023 | 1682625716 |
| | EURORDIS Partnership Webinars: Rare Disease National Network... | 5 May 2023 | 1683316920 |
| | Open Academy - Why you should enrol in our trainings | 9 Oct 2023 | 1696881732 |
| | Open Academy - Why you should enrol in our trainings | 9 Oct 2023 | 1696881732 |
| | Sharing main results and key learnings 2023 ePAG Steering Co... | 16 Nov 2023 | 1700172145 |
| | Yann Le Cam Opening remarks at ePAG Steering Committee Annual Meeting | 16 Nov 2023 | 1700172145 |
| | MEP Tilly Metz - EURORDIS Black Pearl Awards 2024 Honorary Patron | 1 Feb 2024 | 1706824934 |
| | Michelle Muscat - EURORDIS Black Pearl Awards 2024 Honorary Patron | 1 Feb 2024 | 1706824934 |
| | H.E. Willem Van de Voorde - EURORDIS Black Pearl Awards 2024 Honorary Patron | 20 Feb 2024 | 1708466532 |
| | H.E. Edita Hrdá - EURORDIS Black Pearl Awards 2024 Honorary Patron | 20 Feb 2024 | 1708466532 |
| | 13th EURORDIS Black Pearl Awards | 28 Feb 2024 | 1709157733 |
| | MEP Brando Benifei - EURORDIS Black Pearl Awards 2024 Honorary Patron | 6 Mar 2024 | 1709762541 |
| | Championing the Rare | 7 Mar 2024 | 1709848936 |
| | Patient Partnership Pills: ERN NMD Rehabilitation Summer Sch... | 14 Mar 2024 | 1710453740 |
| | EURORDIS Patient Partnership Webinar - Good Practices - Educational Programmes | 14 Mar 2024 | 1710453740 |
| | Ethics and Informed Consent Meetup 14/03/24 | 15 Mar 2024 | 1710540137 |
| | OA24 MRD Webinar #2 recording | 25 Mar 2024 | 1711404142 |
| | Patient Partnership in Healthcare Webinar - Patient Journeys | 25 Mar 2024 | 1711404142 |
| | Access to Treatments | 10 Apr 2024 | 1712779338 |
| | In Conversation: Virginie Bros-Facer and Avril Daly | 19 Apr 2024 | 1713556945 |
| | In Conversation: Virginie Bros-Facer and Avril Daly | 21 Apr 2024 | 1713729735 |
| | Rare Barometer Webinar on the results of the NBS survey | 2 May 2024 | 1714680136 |
| | Mental Health Podcast | 9 May 2024 | 1715284942 |
| | Highly Specialised Care Podcast | 9 May 2024 | 1715284942 |
| | ERDERA 101 Podcast | 9 May 2024 | 1715284942 |
| | Eurordis Wellbeing Partnership Network | 13 May 2024 | 1715630537 |
| | Eurordis on Mental Health | 13 May 2024 | 1715630537 |
| | Patient Partnership Webinar: Go East! Project by ERN Lung | 31 May 2024 | 1717185747 |
| | Ayça Şahin's story and what our survey reveals about long diagnostic journeys | 3 Jun 2024 | 1717444944 |
| | Positively styling life with lymphedema: Nicole Faccio | 3 Jun 2024 | 1717444944 |
| | The impact of an ultra-rare condition: Fatal Familial Insomnia | 3 Jun 2024 | 1717444944 |
| | EURACAN Registry: Developing a long-term vision together | 3 Jun 2024 | 1717444944 |
| | Leif's story | 3 Jun 2024 | 1717444944 |
| | It's Rare Disease Day 2024! | 3 Jun 2024 | 1717444944 |
| | Natalia's story | 3 Jun 2024 | 1717444944 |
| | Jay's story | 3 Jun 2024 | 1717444944 |
| | Katie's story | 3 Jun 2024 | 1717444944 |
| | Dan's story | 3 Jun 2024 | 1717444944 |
| | Mental wellbeing: Hands-on support for the community | 3 Jun 2024 | 1717444944 |
| | Deeann's story | 3 Jun 2024 | 1717444944 |
| | Bor's story | 3 Jun 2024 | 1717444944 |
| | Becky's story | 3 Jun 2024 | 1717444944 |
| | Amber's story | 3 Jun 2024 | 1717444944 |
| | Gene therapies: Promoting development and expanding access | 3 Jun 2024 | 1717444944 |
| | Action within reach: Shaping the future at ECRD 2024 | 3 Jun 2024 | 1717444944 |
| | Giving back to the community | 3 Jun 2024 | 1717444944 |
| | Gene therapies: Why are they important? | 3 Jun 2024 | 1717444944 |
| | Should more diseases be screened for at birth? | 3 Jun 2024 | 1717444944 |
| | No two are alike | 3 Jun 2024 | 1717444944 |
| | Assessing the true value of new health technologies | 3 Jun 2024 | 1717444944 |
| | Finding New Uses for Existing Medicines | 3 Jun 2024 | 1717444944 |
| | Transforming Healthcare through Sharing Data | 3 Jun 2024 | 1717444944 |
| | The effort to make rare disease medicines less rare | 3 Jun 2024 | 1717444944 |
| | EU Action Plan | 5 Jun 2024 | 1717617748 |
| | Simplifying access to cross-border healthcare: a Czech proposal | 12 Jun 2024 | 1718222580 |
| | Young Advocates | 25 Jun 2024 | 1719345752 |
| | Webinar on Approaches to Evaluate Evidence on Rare Disease Guidelines | 26 Jun 2024 | 1719432150 |
| | Marina Zapparoli Manzoni on the power of finding and building a community | 27 Jun 2024 | 1719518550 |
| | Patient Partnership Webinar: The Patient Experience - partne... | 1 Jul 2024 | 1719864151 |
| | Healthcare Webinar: Added Value of Patient Involvement in th... | 17 Jul 2024 | 1721246588 |
| | Young advocate Jane Velkovski on accessibility and making a ... | 25 Jul 2024 | 1721937751 |
| | Patient Partnership Webinar - Unlocking ERN Potential: Disease Specific Measures | 25 Jul 2024 | 1721937751 |
| | 10 Minutes With Rhiannon Walls: Paralympian Sofie Skoubo | 9 Aug 2024 | 1723233757 |
| | 10 Minutes With Rhiannon Walls: Paralympian Sofie Skoubo, Part 2 | 26 Aug 2024 | 1724702555 |
| | Putting Patient Journeys into Action | 12 Sep 2024 | 1726171349 |
| | Zainab Alani on diagnostic delays, intersectionality, and ed... | 26 Sep 2024 | 1727380948 |
| | Open Academy Schools - Apply now! | 9 Oct 2024 | 1728504153 |
| | Open Academy Schools - Apply now! | 9 Oct 2024 | 1728504153 |
| | Rare Parenting | 9 Oct 2024 | 1728504153 |
| | Miriam Wilms on navigating rare disease healthcare as both a... | 31 Oct 2024 | 1730412158 |
| | ERDERA | 13 Nov 2024 | 1731535362 |
| | Patient Partnership Hub - Demo Webinar | 15 Nov 2024 | 1731708154 |
| | Dani's story | 20 Nov 2024 | 1732140153 |
| | Kelly du Plessis on fighting for her son and rare disease ad... | 28 Nov 2024 | 1732831355 |
| | JARDIN: The Joint Action integrating ERNs into national health systems | 6 Dec 2024 | 1733446963 |
| | JARDIN: The Joint Action integrating ERNs into national health systems | 6 Dec 2024 | 1733446963 |
| | David's story | 7 Dec 2024 | 1733533359 |
| | ERNs | 12 Dec 2024 | 1733965351 |
| | Emma and Nellie's story | 19 Dec 2024 | 1734570153 |
| | Julián Isla on how AI can revolutionise rare disease healthcare | 20 Dec 2024 | 1734656550 |
| | Fatimah's story | 3 Jan 2025 | 1735866148 |
| | Khim's story | 16 Jan 2025 | 1736989366 |
| | Khim's story | 16 Jan 2025 | 1736989366 |
| | Rare Disease Day: Sophia's story | 30 Jan 2025 | 1738198959 |
| | Webinar – Rare Barometer Diagnosis Survey Results – 30 January, 2:30-4:30pm CET | 1 Feb 2025 | 1738371754 |
| | Rare Disease Day: Sushimita's story | 7 Feb 2025 | 1738890160 |
| | Rare Disease Day: Sushimita's story | 7 Feb 2025 | 1738890160 |
| | Rare Disease Day: Huy's story | 13 Feb 2025 | 1739408542 |
| | Webinar – Rare Barometer Daily Life Survey Results – 13 ... | 19 Feb 2025 | 1739926950 |
| | Rare Disease Day: Eden's story | 20 Feb 2025 | 1740013348 |
| | Rare Disease Day: Noah's story | 27 Feb 2025 | 1740618147 |
| | Impact of Rare Diseases: More than you can imagine | 1 Mar 2025 | 1740790949 |
| | Assessing the Implementation of Patient Partnership in the E... | 20 Mar 2025 | 1742432547 |
| | Nick Sireau on patient-driven scientific breakthroughs and drug repurposing | 2 Apr 2025 | 1743548544 |
| | The Project Planning Toolkit | 1 May 2025 | 1746075730 |
| | 10 Minutes With Rhiannon Walls: Victoria Oruwari | 17 May 2025 | 1747458139 |
| | Training Session 3: EHDS and Secondary Data | 23 May 2025 | 1747987322 |
| | Training Session 2: EHDS and Primary Data | 23 May 2025 | 1747987322 |
| | Training Session 1: How does the EHDS work? | 23 May 2025 | 1747987322 |
| | 10 Minutes With Rhiannon Walls: National Alliances | 30 Jun 2025 | 1751266919 |
| | Tomasz Grybek on patient involvement and making lived experi... | 4 Jul 2025 | 1751605340 |
| | Achieving Meaningful Involvement of Patients in the Creation... | 11 Sep 2025 | 1757588548 |
| | Developing a Generic PREMs for Rare Diseases by Rare Diseases Ireland | 18 Sep 2025 | 1758196936 |
| | Welcome Package for European Patient Advocacy Group advocate... | 24 Sep 2025 | 1758690147 |
| | Patient Partnership Webinar - Lupus100 and beyond by Lupus E... | 24 Sep 2025 | 1758690148 |
| | ERNs on Air: Tackling medicine shortages for rare endocrine conditions | 26 Sep 2025 | 1758862948 |
| | 10 Minutes With Rhiannon Walls: Halfway to 2030 | 3 Oct 2025 | 1759467738 |
| | 10 Minutes with Rhiannon Walls: Putting Mental Health at the... | 11 Oct 2025 | 1760158953 |
| | Inês Alves on the power of lived experience in shaping rare disease policy | 1 Nov 2025 | 1761976944 |
| | Rare Disease Day: Ahmed's story | 20 Nov 2025 | 1763636547 |
| | Patient Partnership Framework for the European Reference Networks (ERNs) | 12 Dec 2025 | 1765533755 |
| | Rare Disease Day: Christine's story | 18 Dec 2025 | 1766059343 |
| | Małgorzata Kosla on turning a PACS2 diagnosis into global research and action | 29 Dec 2025 | 1767006148 |
| | Guide to developing a Patient Journey | 7 Jan 2026 | 1767787366 |
| | Rare Disease Day: Ken's story | 8 Jan 2026 | 1767873799 |
| | Patient Partnership Webinar - ERN Lung UnDiagnosed Patients Working Group (WG) | 15 Jan 2026 | 1768485784 |
| | Rare Disease Day: Jessa's story | 15 Jan 2026 | 1768485784 |
| | Rare Disease Day: Léon's story | 2 Feb 2026 | 1770033765 |
| | Rare Disease Day: Loago's story | 12 Feb 2026 | 1770894151 |
| | Rare Disease Day: Ren's story | 19 Feb 2026 | 1771498947 |
| | Rare Disease Day: Stephanie's story | 26 Feb 2026 | 1772107339 |
| | EURORDIS Patient Partnership Webinar - An ePAG Performance System by ENDO ERN | 27 Feb 2026 | 1772200959 |
| | EURORDIS Black Pearl Awards 2026 Ceremony Part 2 | 4 Mar 2026 | 1772614938 |
| | EURORDIS Black Pearl Awards 2026 Ceremony Part 1 | 4 Mar 2026 | 1772614938 |
