Call for Members: IRDiRC Task Force on « Enabling and Enhancing Telehealth for Rare Diseases Across the Globe »

News

The Funders Constituent Committee of the International Rare Diseases Research Consortium (IRDiRC) has set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors. This will be accomplished through survey and…

Chan Zuckerberg Initiative launches Request for Information (RFI) on Patient Registry Data Interoperability

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The Chan Zuckerberg Initiative (CZI) has launched a Request for Information (RFI): Patient Registry Data Interoperability as part of the Rare As One project, aimed at mapping data interoperability challenges and support ideas that will make it easier for patient communities to share data with researchers, and for researchers to fully leverage patient voices in…

BioData World Congress 2021: Big Data and Digital Transformation in Pharmaceuticals and Healthcare

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The BioData World Congress 2021 organised by Terrapinn is Europe’s largest congress covering big data in pharmaceutical development and healthcare aimed to showcase innovation, demonstrate success and break through the obstacles and barriers to ensure that innovations in genomics and big data enter the clinic with speed and efficiency. This in-person event will take place in Basel, Switzerland over three days from November 2nd–4th.…

World Orphan Drug Congress 2021: Strategy, advocacy and partnering for the orphan drug industry

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The World Orphan Drug Congress organised by Terrapinn is a global, multi-stakeholder orphan drugs & rare diseases meeting that aims to provide attendees with a one-stop progressive scientific and strategic solution to the orphan drugs industry. The in-person event will take place in Sitges (Barcelona), Spain over four days from November 15th – 18th. Patient groups can ask…

Open consultation of the Strategic Research and Innovation Agenda (SRIA) of the European Partnership ERA4Health

News, Uncategorized

The European Commission (EC) is inviting interested stakeholders to participate in the open consultation of the Strategic Research and Innovation Agenda (SRIA) of the European Partnership « Fostering an ERA for Health » (ERA4Health) by providing feedback through this online survey. The deadline for providing feedback to the Draft SRIA is October 29th, 2021. The draft SRIA…

New Report: How patient organizations can drive FAIR data efforts to facilitate research and healthcare

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Last March, the World Duchenne Organization in collaboration with Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing for Duchenne. During this meeting, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare. Click here to read the full report In order to improve care…

C-Path and Pulse Infoframe establish patient-centered data harmonisation partnership for rare disease research

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[PRESS RELEASE] The Critical Path Institute (C-Path), an independent nonprofit organisation, and Pulse Infoframe, a real-world evidence generation, health informatics and insights company, have announced their collaboration to advance technologies and tools to further rare disease research and drug development. Both organisations will support the creation of more streamlined and transparent informed consent processes and…

EMA Webinar for SMEs and Academia on the Clinical Trial Regulation and the Clinical Trials Information System

News

The European Medicines Agency (EMA) is organising a webinar for small and medium enterprises (SMEs) and academia on the Clinical Trial Regulation (Regulation (EU) No 536/2014) and the Clinical Trials Information System (CTIS). The webinar will take place on November 29, 2021 from 09.00 – 13.15 CET. The webinar is being organised as a training event and will present: an…