As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme that will take place from October 26th – 27th at MUG in Gdańsk, Poland. Registration is currently open but will close on April 26th. More information and registration here.
The deadline for the “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” EJP RD- ERN Workshop has been extended until March 24th. Registration is open here. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April…
Happy International Women’s Day ! EJP RD is proud to celebrate the women who represent 56% of the EJP RD staff working for progress, innovation and for the benefit of everyone with a rare disease.
It’s Rare Disease Day! For the occasion, EJP RD launched a video focusing on the connection between the expertise and knowledge from the Rare Diseases Community of a specific country with the EJP RD countries. The less-than-3min video explains the Rare Diseases National Mirror Groups (NMGs) and their objectives, as well as a few testimonies…
The European Rare Disease Research Coordination and Support Action consortium (ERICA) is organising the WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” in collaboration with EJP RD and ERN BOND. This webinar will provide you with an overview of what should be done before starting a clinical trial in a study site.…
A networking event, funded by EJP RD’s Networking Support Scheme, is being organised in Madrid, Spain on March 23rd-24th. This unprecedented event for the CTNNB1 community aims to bring together healthcare professionals, industry, families, and patient advocacy organizations working together to raise awareness, accelerate the development of effective treatments and improve the lives of those…
This symposium on inherited arrhythmias is funded by the EJP-RD Networking Support Scheme and will take place in Amsterdam in March 2023. Registration and more information here. The meeting will include talks on cutting edge research from some of the world’s leading investigators in this field. It will also include discussions on developing the new…
In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by Rīga Stradiņš University. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia. Registration is open here,…
In the context of EJP RD’s ERN Workshops, a workshop entitled “Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by Dr Marco Vitelarro. The in-person event will take place on 22-23 May 2023 at Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, in Milano, Italy. Registration is open here, and closes on March 7th. This workshop is addressed…
The European Joint Programme on Rare Diseases (EJP RD) - Work Package 19 (WP19: “Facilitating partnerships and accelerating translation for higher patient impact”, aims to support the RD community to more effectively translate high quality research into high impact interventions for the RD patient community. For that, WP19 offers three main services: Mentoring for translational research…