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 her at EJP RD, and excited to see her drive positive change in the rare disease community!

“I am privileged to re-join EURORDIS as CEO. My goal will be to build on both my professional experience and personal insights in rare disease research and patient advocacy to further EURORDIS’s mission, ensuring that the voices of all people living with a rare disease in Europe are heard and their needs are met,” Virginie stated.

Yann Le Cam, outgoing Chief Executive Officer of EURORDIS, expressed his full confidence in Bros-Facer’s leadership:

“I am thrilled to pass the baton to Virginie. Her unique blend of professional expertise and personal commitment to rare diseases makes her the ideal leader to guide EURORDIS into the future.”

Source: EURORDIS

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 sessions focusing on patient engagement and leadership. Knowledge-sharing and networking opportunities are fostered throughout the week.

The programme will include off-site visits to research facilities/hospitals, lots of contact time with faculty and EURORDIS staff and the chance to network with fellow patient advocates and researchers, supporting each other in learning and practice during the training and beyond. Schools are delivered in English in a blended format, comprising e-learning modules, pre-training webinars and face-to-face intensive days.

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/ 

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 face-to-face training.

From 2023, the in-person 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) will take place during the same week, incorporating three days of parallel sessions and two days of joint sessions focusing on patient engagement across the whole life-cycle of a medicine. Greater knowledge sharing and networking opportunities will be fostered with both sets of trainees together during the week.

Registration is mandatory and open until October 31st.

Further information and a registration link are available here.

NOMINATIONS: Just like every year, nominations can be submitted for any individual, organisation or company (including yourself and/or your own organisation) in any of the 12 categories below:

• EURORDIS Volunteer Awards
• EURORDIS Members Award
• Lifetime Achievement Award
• Young Patient Advocate Award
• European Rare Disease Leadership Award
• Policy Maker Award
• Scientific Award
• Media Award
• Social Media Award
• Company Award for Innovation
• Company Award for Patient Engagement
• Company Award for Health Technology

Submit nominations here.

Find more information about the Black Pearl Awards here.

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 ambition is to collect relevant responses at the national level and for specific disease areas, while developing an image of the diagnostic journey for our global community.

Following the survey, RDI members can access findings for their country or a disease area in a detailed digital dashboard with all results.

This is an excellent opportunity to ensure your organisation has significant data on diagnosis for the country or disease area you represent.

Deadline for the survey: 15 June

The event will take place from 07.30 – 13.30 CET (10.30 – 16.30 local time) at the Sweden Pavilion (Sustainability District), World Expo, Dubai (United Arab Emirates).

The aim of the event is to support rare diseases as a global priority for equity, discuss impact and implementation of the UN Resolution on Rare Diseases at the global and local level, and build a roadmap for the future of rare diseases beyond health, with a focus on Africa and low- and middle-income countries.

For more information: https://events.eurordis.org/rarediseases

The EURORDIS Scientific Award, which forms part of the annual Black Pearl Awards, recognises Prof. Schaefer’s scientific excellence and comprehensive reach, the outstanding dedication he has demonstrated in the rare disease community and the positive impact he has made on rare disease research and patient community on an international level.

EJP RD and EURORDIS acknowledge his leadership and outstanding work in the ERN Coordinators Group and in several of the cross-ERNs Working Groups, as well as his prominent role in rare disease Registries, his innovative approach in the use of health outcome measures to drive improvements in care and his work within the EJP RD.

The Award ceremony will be held online on February 8th at 18.00 CET. Registration is mandatory.

For more information and registration: https://blackpearl.eurordis.org/attend-support/

The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease.

Submissions for the 2022 Photo Award will be open until 16 January 2022.

More information and submit your photo here.