Author: admin_irdirc

The National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS) and the U.S. Food and Drug Administration (FDA), Center for Drug Evaluation and Research (CDER) are hosting a jointly sponsored virtual workshop to explore Regulatory Fitness in Rare Disease Clinical Trials. The virtual workshop will take place over two days on May 16th – 17th. Academic investigators, patient groups, and small or emerging pharmaceutical and biotechnology […]

Rare Diseases South Africa (RDSA) has a vision to see a South Africa where those impacted by rare diseases and congenital disorders have access to life-saving therapies and support for an improved quality of life. One of the actions which will allow that is a validated patient registry that is confidential and secure and that […]

The Indian Organization for Rare Diseases (IORD) has undertaken several initiatives recently to enhance the public profile of rare diseases in India. On the occasion of Rare Disease Day 2022 (February 28th), a press conference was called at the State Information & Public Relations Department in Hyderabad, India as a collaborative effort between IORD and […]

Earlier this year, the Chan Zuckerberg Initiative (CZI) launched two Requests for Applications (RFA) for grant opportunities that will fund collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing our understanding of the fundamental science of rare diseases. The Networking Expo is a two-day ideation and matchmaking workshop specifically designed as an opportunity for researchers and […]

The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with IRDiRC serving as an associate partner. The ECRD is a patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies. The fully online conference will take place on June 27th – July 1st from 14.00 – 18.00 CET. Poster abstracts […]

On February 25th, IRDiRC member Western Australian Department of Health announced the launch of a new Rare Care Centre in Perth, Western Australia, which will provide a holistic model of care for children with rare and undiagnosed diseases. Based at Perth Children’s Hospital (PCH), the Centre has secured funding from leading Australian philanthropists and foundation, with a total commitment of […]

In the framework of the French Presidency of the Council of the European Union (PFUE 2022), and under the high patronage of the French Ministry of Higher Education, Research and Innovation (MESRI), Inserm (French national institute of health and medical research) is organising a scientific symposium on Rare Diseases. The hybrid conference (in-person for specially invited attendees and online for […]

The Chan Zuckerberg Initiative (CZI) is inviting applications from collaborative teams bringing together patient-led rare disease organisations and research teams for 4-year research projects aimed at advancing understanding of the fundamental science of rare diseases across two requests for applications (RFAs):  The Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease RFA aims to support the application of single-cell biology methods to rare inflammatory pediatric […]

The iHope™ Genetic Health (iGH) program launched by Genetic Alliance and supported by Illumina aims to expand access to whole-genome sequencing to low- and middle-income communities around the world, with more than one-third of funds being allocated to patients in Africa. iGH is requesting information from stakeholders to formulate a Request for Proposals (RFP) from laboratories […]

On February 7th 2022, Horizon Magazine, issued by the European Commission’s Directorate-General for Research and Innovation, published an interview with past and present IRDiRC leadership. In view of Rare Disease Day on February 28th, the magazine has dedicated its Monthly Focus to developments in rare disease research and innovation in Europe and beyond, with a […]