The World Health Organization (WHO) is seeking experts to serve as members of the Strategic Advisory Group of Experts on In Vitro Diagnostics (SAGE IVD). This “Call for Experts” provides information about the advisory group in question, the expert profiles being sought, the process to express interest, and the process of selection. For more information […]
Read More
As part of the NIH’s Somatic Cell Genome Editing (SCGE) program, the Office of Strategic Coordination (Common Fund) intends to publish a prize competition announcement to solicit entries for the multi-phase TARGETED (Targeted Genome Editor Delivery) Challenge. The TARGETED Challenge aims to improve the current state of in vivo delivery technologies for genome editors in two […]
Read More
The next installment of the “Challenges in Pediatric Neuroscience Research Webinar Series”, will be on May 12th, 2023 from 2-3 PM EST. In this episode of our ongoing series, we will be speaking with Dr. Heather Hazlett, a pediatric neuropsychologist at the University of North Carolina at Chapel Hill, about remote neuropsychological assessments. This type […]
Read More
Prof. Guillaume Canaud (Necker Hospital for Children, AP-HP, France) offered a great presentation on “Targeted therapy for patients with PIK3CA-related overgrowth spectrum“ at the RE(ACT) Congress in Berlin (Germany). Check out his impressions on the IRDiRC Conference x RE(ACT) Congress at the following link: here.
Read More
We empowered a community that deserves to be heard. #RAREvolution Berlin, Germany – 24 March 2023. The seventh edition of the RE(ACT) Congress and the fifth edition of the IRDiRC Conference were held jointly in-person in Berlin (Germany) from 15-18 March 2023. The event was organized by the BLACKSWAN Foundation in collaboration with the International […]
Read More
The European Partnership on transforming health and care systems (THCS), a Cofund action under the Horizon Europe Programme designed to support coordinated national and regional research and innovation programmes along with capacity building, networking, dissemination and other key activities to support health and care systems transformation, will launch its first Joint Transnational Call (entitled “Healthcare […]
Read More
Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases Research Consortium (IRDiRC) to deliver diagnostic tests for most rare diseases by 2020, invites all its partners to attend the Solve-RD Final Meeting 2023 in Prague (Czech Republic) or online. The […]
Read More
Save the date for the 9th Rare Disease Summer School organized by ITINERARE, a recently established University Research Priority Program of the University of Zurich focusing on “Innovative Therapies in Rare Diseases”. The Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau) close to Zurich from July 4th to 7th, 2023. The program includes lectures by national and international rare disease experts on topics […]
Read More
The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults. Through the support of prospective natural history and/or biomarker studies with high quality and interpretable data elements, FDA […]
Read More
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 […]
Read More