EURORDIS-Rare Diseases Europe proudly announces the appointment of Virginie Bros-Facer, PhD, as its new Chief Executive Officer, starting March 2024. Virginie brings an extensive professional background in rare diseases, scientific research, and patient advocacy, combined with personal insights from her niece’s experience with Congenital Disorders of Glycosylation. EJP RD is proud to have collaborated with…
The 2024 edition of the Open Academy Schools will take place in-person on 3-7 June in Barcelona. The face-to-face intensive week of the Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School) and the Open Academy School on Scientific Innovation & Translational Research (formerly EURORDIS Winter School) take place during the same week, incorporating parallel sessions, focusing on School-specific topics, and joint…
The deadline for nominations for the #EURORDISAwards2024 has been extended to September 10th! The awards recognise the outstanding achievements and exceptional work of people making a difference for the rare disease community. Do you know someone who goes above and beyond for your community? Don’t miss this chance, nominate now: https://blackpearl.eurordis.org/nominate/
EURORDIS is delighted to announce that applications for the 2023 edition of the EURORDIS Open Academy Schools are now open. The 2023 edition of the Open Academy Schools will take place in-person from 19-23 June in Barcelona and, following a review of our training offerings, we are excited to announce a new format for our…
EURORDIS is pleased to announce that nominations for the EURORDIS Black Pearl Awards are now open until September, 4th 2022. The Awards are presented to patient advocates and organisations, policy makers, scientists, companies, and media in recognition of their exceptional achievements and outstanding commitment to the rare disease cause. NOMINATIONS: Just like every year, nominations can be submitted for any individual, organisation or company (including yourself…
RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease. This survey aims to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey. This is a global survey, available in 26 languages.…
The NGO Committee for Rare Diseases, Ågrenska Foundation, Rare Diseases International (RDI), and EURORDIS-Rare Diseases Europe are jointly organising their 2022 Global Rare Disease Day Event on the occasion of Rare Disease Day (February 28th) at the World Expo, Dubai. The event will take place from 07.30 – 13.30 CET (10.30 – 16.30 local time) at…
The European Joint Programme on Rare Diseases (EJP RD) is proud to announce that EJP RD member Prof. Franz Schaefer has been conferred the EURORDIS Scientific Award for his work and the positive impact he has made on rare disease research and the patient community. The EURORDIS Scientific Award, which forms part of the annual Black Pearl Awards, recognises…
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each…
DEADLINE EXTENDED: 23 NOVEMBER 2021 Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?If yes, this paediatric…