The International Rare Diseases Research Consortium’s (IRDiRC) Regulatory Scientific Committee (RSC) has two openings for new members who are from the following regions: Africa, Australasia or South America. Apply before April 30, 2024. IRDiRC has 4 Scientific Committees, one each for the Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Regulatory Scientific…
On behalf of EURORDIS-Rare Diseases Europe, we would like to thank all of you who attended the 13th EURORDIS Black Pearl Awards, in Brussels or online, on Tuesday, 20 February! EURORDIS-Rare Diseases Europe are thrilled to inform you that the ON-DEMAND CEREMONY of the 13th EURORDIS Black Pearl Awards is now available at this link: https://www.eurordis.org/black-pearl-awards/past-editions/ On the same…
Today marks the launch of the EJP RD intermediate courses series on statistical methods for rare diseases clinical trials. The first intriguing topic « Statistical Methodology for Very Small (and Very Large) Studies » by Prof. Geert Molenberghs, is now available via the following link: https://www.youtube.com/watch?v=7uLBqaqjGc4 Stay tuned for the release of the next five courses, with…
Watch the insights from the latest EJP RD interview with Sarah Weckhuysen, a researcher funded under EJP RD’s Joint Transnational Call. The collaborative approach of Sarah’s consortium, uniting experts across Europe which involves clinicians, scientists, and patient organizations, exemplifies a successful synergy for impactful research. Kudos to the team’s dedication and promising results! Watch her interviewMore…
IRDiRC has just announced the launch of the latest publication titled “Advancing Diagnosis and Research for Rare Genetic Diseases in Indigenous Peoples” now available on nature.com.Read the publication here: https://www.nature.com/articles/s41588-023-01642-1“The Indigenous populations taskforce brought together Indigenous and non-Indigenous rare disease leaders from across the globe to tackle the inequity in rare diseases diagnosis. The outputs provide…
In a groundbreaking move, the European Union (EU) has announced the initiation of the Joint Action on Integration of ERNs into National Healthcare Systems (‘JARDIN’) project. With over 6,000 rare diseases affecting an estimated 30 million people in Europe, the need for effective networking and cooperation in diagnosis and treatment is paramount. Read the press…
To mark Rare Disease Day, we are launching the EJP RD Funded Project Dashboard! Dive into a comprehensive view of all funded projects (Joint Transnational Calls and Networking Support Scheme calls) Explore the Dashboard: https://funded-projects.ejprarediseases.org/ Uncover essential project details, budgets, abstracts, and other fascinating figures.
It’s Rare Disease Day! The European Joint Programme on Rare Diseases (EJP RD) proudly presents its latest video: « The European Joint Programme on Rare Diseases: Transformative Stories. » This production features heartfelt testimonies that illustrate the profound impact of EJP RD. The video is available here Watch the video to witness the transformative journey and the…
IRDiRC is delighted to co-host, together with Hope for Rare Foundation and Fudan University, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference on May 23-25 in Shanghai (China). The conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will bring together over 100 speakers from…
Watch the insightful interview with Veronica Popa, a patient expert, as she delves into the subject of patient engagement in pre-clinical therapy development, the challenges, and the impact of EJP RD funding.The video is available hereIn this interview, she explores examples and discusses the challenges hindering patient participation in research projects.More information on EJP RD…