The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies.

ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries.
Interested candidates are invited to send their resume, biosketch and letter of motivation to  scisec-irdirc@ejprarediseases.org before the 2nd of April, 2023.

More information about the Interdisciplinary Scientific Committee (ISC): https://irdirc.org/isc/

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/

Save the date: The Marfan Foundation is hosting a webinar titled Genetic Testing: US & Europe on April 12, 2023, from 8-9 PM CEST.

Dr. Laura MUINO MOSQUERA, from Ghent University Hospital, Belgium and member of the Heritable Thoracic Aortic Disease (HTAD WG), and Dr. Jessica D. KUSHNER, from Oregon Health & Science University, USA will be presenting about genetic testing - when genetic testing is recommended, who should get it, the benefits and possible outcomes.

Learn more and REGISTER HERE

VASCERN will hold a webinar on Tuesday April 18, 2023 at 6 PM (CET) titled: Everything you wanted to know about vascular Ehlers-Danlos Syndrome.

Presenters include members of the Medium Sized Arteries Diseases Working Group (MSA-WG):Prof. Tristan Mirault, Dr. Anna Stenborg, and Eva Collado (ePAG Co-Chair for MSA).

This webinar will be a question and answer session with our experts. It is directed towards patients with Vascular Ehlers-Danlos Syndrome (vEDS), but open to all interested.

Register here

The ESC Working Group on Adult Congenital Heart Disease is looking forward to coming together for its annual in-person meeting, EuroACHD 2023 (formerly known as EuroGUCH), taking place on 21-22 April 2023 at Hôpital Européen Georges-Pompidou in Paris.

We invite you to visit the congress website and check the scientific programme through the following link: EuroACHD 2023

Register now to benefit from the early fee!

Develop your leadership skills in Poland… with your accommodation and meal costs covered!

Apply now to receive one of the 21 fellowships on offer for the #EJPRD Leadership and Communications Skills training for patient advocates. Your accommodation and meals during training hours will be covered, as well as up to 435€ of travel costs. We are committed to ensuring that our training is accessible to patient representatives and advocates from all backgrounds, with those from Eastern Europe particularly encouraged to apply.

🚨 Fellowship applications are open until 26th April 2023.

📍 Gdańsk, Poland

📆 26 – 27 October, 2023

ℹ️ More information: https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills-2/

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 and registration here

Registration is open here and closes on May 25.