The VASCERN MSA-WG Monthly Meeting will take place on February 2nd, 2023 at 5.00 pm (Paris time).

The VASCERN ePAG Monthly Meeting will take place on February 14th, 2023 at 10.00 am (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on February 15th, 2023 at 4.00 pm (Paris time).

The VASCERN NEUROVASC-WG Monthly Meeting will take place on February 16th, 2023 at 5.30 pm (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on February 20th, 2023 at 5.30 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on February 27th, 2023 at 5.00 pm (Paris time).

As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.

Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.

The course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on rare diseases.

To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted.

Registration is mandatory and is currently open. Registration closes on February 15th.

More information and registration here: https://www.ejprarediseases.org/event/training-on-strategies-to-foster-solutions-of-undiagnosed-rare-disease-cases-3/

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center.

The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands.

Registration is open here, and closes on February 1st.

The workshop, open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.

More information here

Save the date! We are pleased to announce that the 11th International Lymphoedema Framework Conference will take place on 13 – 15 June 2023 in Nottingham, UK. The venue is the East Midlands Conference Centre, University of Nottingham.

The conference is organised in collaboration with the Welsh framework, Lymphoedema Wales.

An inspiring scientific programme is being prepared with plenty of possibilities for gaining new knowledge and sharing experiences about lymphoedema and related disorders, and for networking with health care professionals and patients from all over the world.

More information will soon be available on the website.