The European Commission has published guidance on the clinical evaluation of orphan medical devices. Orphan devices are medical devices or their accessories, which are intended to be used for diseases or conditions affecting only a small number of individuals each year. Often, they are used to treat a rare disease or medical condition for which…
Are you an adolescent aged from 12 to 18 living with arthritis (including rare juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, systemic juvenile idiopathic arthritis, giant cell arteritis) or multiple sclerosis? Are you interested in getting the skills to actively participate in scientific research to contribute to developing and shape the themes of health, rare…
The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. The latest edition of the conference, organised by EURORDIS-Rare Disease Europe under the auspices of the Belgian EU Council Presidency, took place in Brussels and online on 15-16 May 2024. As a result of and informed…
Check out the #ECRD2024 comic strip showcasing major milestones from the 1st ECRD to today and beyond!At labor #7, we celebrate the launch of EJP RD in 2019, marking a major step forward in unifying and accelerating rare disease research. Read the document here. Introduction: In Europe, four champions – Emilia, Сamilo, Rosalind and Damiano…
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…
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…
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…
Save the Date for the International Congress on Rare Diseases and Orphan Drugs on February 29th, 2024 (Hybrid -Technopolis City of Athens Gasholder 1 – Auditorium “Miltiadis Evert”) & March 1st 2024, (Digital). Registration is open here (early bird deadline: January 31st, 2024) Don’t miss the unique opportunity to be part of a transformative event that…