The presentations are now available here: https://www.rarediseases-conference.com/history/presentations-2023/

Following the success of the previous two years and having advanced the policy agenda on both national and international level, the Organizing Committee – consisting of the Rare Diseases Greece (RDG), the umbrella organization with its 28 members that represent the rare disease community in the country, and the “95” Rare Alliance Greece – brings together all the key initiatives and stakeholders currently shaping the rare disease landscape with the aim to highlight the urgent call to action in adopting a European RD Action Plan and its implementation across Member States.

EJP RD Coordinator Dr. Daria Julkowska was a member of the Advisory Committee.

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 from the NMG Netherlands, NMG Portugal, and NMG UK.

Watch the video below

The event aims to give greater visibility to rare disease groups around the world. Registration is open here.

BE PART OF THE GLOBAL EVENT
To be part of the event, please share a 30-second video introducing your organization and why Rare Disease Day is important to the community you represent. Ideally, your video should be vibrant, colourful and lively to make sure it stands out and keeps with the theme of Rare Disease Day. All participating organizations are featured on the event page with a logo and link to each organization.

All videos will be aired on Rare Disease Day, and participating organizations will be listed on the event website.

The deadline for submitting a video is Thursday, 16 February 2023.
Agenda and more information here.

On Rare Disease Day 2022, Prof. Bloom will take over our Instagram account and post stories relating to EJP RD as well as the important advocacy work that she’s engaged in.

At 2:30 pm CET, Prof. Bloom will come LIVE on EJP RD’s Instagram all the way from Dubai. She will be joined by EJP RD member Sonja van Weely, who will answer questions about EJP RD’s Networking Support Scheme funding opportunity.

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

Read the interview where Dr. Daria Julkowska (scientific coordinator of the EJP RD) speaks about how the European Joint Programme on Rare Diseases can help turbo-charge the research for the benefits of patients.