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

The Funders Constituent Committee (FCC) have 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 systematic review of existing models of telehealth, their uptake and usage by the rare disease community, and their specific value and effectiveness. The Task Force will then develop “best practices” for introducing telehealth services into communities where they would be most beneficial using realistic and culturally [...]

Read

 
 
 

EJP RD Joint Transnational Call 2022, a funding opportunity for RD research projects

The European Joint Programme on Rare Diseases (EJP RD) announced the upcoming launch on December 14th of the fourth EJP RD Joint Transnational Call (JTC) 2022, aimed at funding multilateral research projects on rare diseases under the EJP-COFUND action.

The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project, with the call topic being “Development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.”

Read

 
 
 

Share4Rare Call4Projects 2022 for patient-centred research initiatives

The 2nd Share4Rare Call for Research Projects will be open until December 10th 2021.

Share4Rare aims to put rare diseases patients at the centre of research, not only by asking them directly regarding their condition but also by providing them a safe platform where they can participate in collaborative research projects.

The Share4Rare platform enables to gather data from patient and caregivers on disease related questions and other areas of scientific interest: burden and impact of the disease, its natural history, how the disease affects quality of life, etc.

Read

 
 
 
 
 
 

ERKReg Reaches 10,000 Patients

The ERKReg, a Web-based registry for all patients with rare kidney diseases, recently established by the European Rare Kidney Disease Reference Network (ERKNet), has just crossed the 10,000 patients mark.

This important milestone was reached after the 10,000th patient has been enrolled in the Registry by Ghiles Larbi from the Necker Hospital in Paris, France. Almost 1800 patients have already been enrolled from the Necker Hospital!

Read

 
 
 

Announcement of the launch of “Open Research Europe”

Open Research Europe (OCE) is an open access publishing platform for the publication of research stemming from Horizon 2020 funding across all subject areas. The platform makes it easy for Horizon 2020 beneficiaries to comply with the open access terms of their funding and offers researchers a publishing venue to share their results and insights rapidly and facilitate open, constructive research discussion.

Read