RARE2023 is honored to welcome world-renowned speakers from 15 different countries, all of whom are experts in the field of Rare Diseases, who will present ground-breaking and cutting-edge news on diagnosis, treatments and networking in Rare Diseases.

Among the new topics of RARE2023 are autoimmune disorders, palliative care in rare disease, surgical procedures in ultra-rare disorders, and newly approved innovative therapies for genetic and non-genetic rare diseases.

Register here before 9 November 2023 (followed by late and on-site registration)

The conference will provide insight into what the future of medicine will look like by presenting concrete examples of personalised medicine approaches and aspects already in practice. The conference will demonstrate that implementation of personalised medicine is progressing through all disciplines and medical fields and aims to inspire other initiatives to adopt similar approaches.

As only few seats are left for onsite participation, we kindly encourage you to register as soon as possible. The conference will also be accessible online but registration is mandatory.

Find more information here, and register here.

The objective of this letter was to reiterate that this is a request from the wider community. 58 organisations – including the European National Alliances – signed the letter, representing learned societies, ERN coordinating centres, health and research groups and initiatives, and industry umbrella groups. 

More information, as well as the letter and the list of signatories, is available here.

The second stop of the EBW22 will be held as an in-person event in Rome, Italy on October 13^th-14^th at the Auditorium San Paolo, Bambino Gesù Paediatric Hospital. Because of the EBW22 Roadshow format and the purpose to co-design a shared statement in paediatric biobanking, the meeting will be face-to-face and interactive.

The meeting will be kicked off with an overall view of European commitment to paediatric research and healthcare followed by an in-depth exchange on good practices and priorities of various actors to raise awareness and citizen science, facilitate assent and consenting processes, and improve engagement. The first day will conclude with a keynote on innovative genomic approaches to undiagnosed patients and precision medicine in children by Marco Tartaglia and Franco Locatelli. 

The second day will be framed into two sessions of “Interactive training for a community of practices” where small groups will work together in parallel 

• to recognize and map good practice, training, and learning from each other to build a paediatric (research) biobanking community based on shared knowledge and good practices
• to codesign a shared recommendation on paediatric biobanking. 

The detailed program is now available here.

Registration is mandatory and open here; seats are limited to 100 attendees.

For more information: https://www.bbmri-eric.eu/news-events/europe-biobank-week-roadshow-2022-save-the-date-for-the-second-stage/

The online event will take place over three days from December, 1st to December, 3rd.

Registration will open soon.

More information here.

The second stop of the EBW22 will be held as an in-person event in Rome, Italy from October 13th – 14th at the Auditorium San Paolo, Bambino Gesù Paediatric Hospital.

Paediatric (research) biobanking is a European priority. Accordingly, the critical starting point of the second stop will be an overall view of European commitment to paediatric research and healthcare and an in-depth exchange on good practices and priorities of various actors to raise awareness, facilitate assent and consenting processes, and improve engagement.

The UPDATED programme is now available here.

Registration is mandatory.

For more information: https://www.bbmri-eric.eu/news-events/europe-biobank-week-roadshow-2022-save-the-date-for-the-second-stage/

The hybrid event (in-person + virtual conference) will take place over two days on October 5th – 6th in Paris, France.

Registration is free but mandatory for virtual or in-person participation. The programme features the following topics:

• Incorporating patient’s perspective in personalised healthcare
• The future of personalised medicine in clinical trials settings
• Challenges in developing health data governance
• Creating a sustainable innovation environment for personalised medicine
• Health economic benefits – beyond cost-effectiveness

More information and registration here: https://evenement.anr.fr/icpermed-conference

The fully online conference will take place over two days on March 28th – 29th from 13.00 – 18.00 CET.

Registration for the event closes on March 21st.

The conference will allow attendees to interact virtually with a multidisciplinary forum of researchers, clinicians and technology developers, as the community shares collective insight on the genomic basis of rare diseases; strengthening your understanding of human biology, disease mechanisms, and innovative therapeutic approaches. Session topics will focus on:

• Diverse genomes as drivers of precision medicine
• Non-Mendelian forms of rare disease
• Treatment of rare diseases
• High throughput functional assays to improve variant interpretation

More information and registration: https://coursesandconferences.wellcomeconnectingscience.org/event/genomics-of-rare-disease-virtual-conference-20220328/

The fully online conference will take place on June 27th – July 1st from 14.00 – 18.00 CET.

Poster abstracts submissions for ECRD 2022 are open until April 21st. The organizers encourage patient groups, academics, health care professionals and all other interested parties having conducted research or studies on rare diseases or public health projects to submit a poster abstract.

The ECRD allows attendees to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.

More information on poster abstract submission: https://www.rare-diseases.eu/posters/

Registration here: https://www.rare-diseases.eu/register/

The fully online conference will take place over two days on March 1st – 2nd from 09.00 – 17.30 CET.

Targeted towards healthcare stakeholders such as government officials, pharmaceutical industry executives, public and private health services providers, health economists, health policy experts, healthcare professionals, nurses, academics, researchers, and journalists, the conference will address the following themes:

More information and registration here: https://www.rarediseases-conference.com/