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…

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European Medicines Agency (EMA) launches pilot project on drug repurposing

News

The European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) are launching a pilot project to support the repurposing of medicines. The aim of this initiative is to support not-for-profit organisations and academia to gather or generate sufficient evidence on the use of an established medicine in a new indication with the view to have this new use formally…

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

News

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…

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

News

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.…

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

News

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…

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Expression of interest to participate in the first online paediatric expert patients training workshop

EJP RD News

DEADLINE EXTENDED: 23 NOVEMBER 2021 Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?If yes, this paediatric…

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European Commission (EC) opens funding call on development of new effective therapies for rare diseases

EJP RD News

On October 6th, 2021, the European Commission (EC) opened a new funding call titled “Tackling diseases (Two Stage – 2022) (HORIZON-HLTH-2022-DISEASE-06-two-stage)” in the context of the Horizon Europe Framework Programme on the development of new effective therapies for rare diseases. Since the EC recommends that proposals try and take stock of the FAIR guidance and other models…

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Launch of new Innovative Medicines Initiative project, Screen4Care

News

Yesterday marked the official launch of Screen4Care which is a new EU Research Project focussed on accelerating diagnosis for Rare Disease patients through genetic newborn screening and advanced analysis methods such as machine learning and Artificial Intelligence. The project will run for a period of five years with a total budget of EUR 25 million provided by the Innovative Medicines Initiative (IMI 2 JU), a joint undertaking…

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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…

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Applications open for Duchenne Patient Academy 2021

News

The Duchenne Data Foundation, in collaboration with the World Duchenne Organization, is launching the 2021 edition of the Duchenne Patient Academy (DPA). In this intensive training session, patient advocates receive training and updates to build a strong base for current and future global advocacy. Applications are now open here. Duchenne Patient Academy works in partnership…

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