Our new interview of Pr. Pierre Emmanuel Gleizes – RIBOEUROPE: The European Ribosomopathy Consortium!

Watch the insightful interview with Pr. Pierre-Emmanuel Gleizes, Coordinator of RIBOEUROPE: The European Ribosomopathy Consortium.  Funded by the European Joint Programme on Rare Diseases (EJP RD), Pierre-Emmanuel Gleizes sheds light on the remarkable work his team is doing to combat a rare disease and the tremendous potential of European collaboration in achieving their goals. More…

IN-PART: New Global Challenge seeking rare diseases research

The new Global Challenge campaign aims to mobilise collaboration between academia and industry to address unmet medical needs in rare diseases. IN-PART is inviting the tech transfer community and academic researchers to share non-confidential details of rare diseases research and technologies. There are no associated costs or requirements for an IN-PART subscription to engage with this…

IHI Announces Considered Topics for Upcoming Calls for Proposals + Related event (IHI Call Days)

The Innovative Health Initiative (IHI) has revealed the potential topics for inclusion in their upcoming calls for proposals. With the aim of enabling potential applicants to begin preparations, IHI has decided to publish the draft topic texts ahead of the official call launch, scheduled for summer 2023. IHI call 4 (two-stage call) Expanding translational knowledge…

New EJP RD ERN Workshop – Urogenital Tissue Engineering from bedside to bench and back!

Regenerative Medicine aims to address unmet medical needs by combining our body’s own repair abilities with innovative engineering.  Our workshop will look out at new developments and technologies to overcome disillusions and move forward as there is a clear and urgent need for novel biomaterials and functional meshes. It will take place at the Regenerative…

EJP RD – RD Connect Genome-Phenome Analysis Platform (GPAP) webinar

This is an introductory webinar to demonstrate the benefits of using the RD-Connect Genome-Phenome Analysis (GPAP) platform for rare-disease analysis. The aim is to demonstrate how to use the RD-Connect GPAP Genomic Analysis module, which  supports research use cases that might lead to diagnosis, including gene discovery and cohort analysis. This webinar will take place online…

Neuropathies Rehabilitation Summer School in Rome

The NEUROPATHIES REHABILITATION SUMMER SCHOOL will take place at Hotel Excel Monte Mario in Rome from September 18th to 21st, 2023.  This summer school aims to improve your knowledge on current and future modalities of rehabilitation in rare and complex peripheral neuropathies. The key objectives of this summer school is to Educate clinicians, researchers, physiotherapists…

New ERN Workshop: CDH1 related hereditary diffuse type gastric cancer: the shift from prophylactic total gastrectomy to optimal endoscopic surveillance

The hereditary tumour syndrome that correlates with a carriership of a pathogenic CDH1 variant is very rare and as such underrecognized. Early recognition however can save lives by preventing death due to diffuse type gastric cancer at early age. Therefore, (refresher) training of all clinical workers involved in early recognition, surveillance, treatment, and aftercare is important. This two-days…

New ERN Workshop: Advances in regenerative medicine and tissues engineering for rare musculoskeletal diseases

This workshop aims to improve the knowledge and competences on up-do-date regenerative medicine and tissue engineering technologies exploited in the design of advanced therapies for rare diseases affecting skeletal muscles and bones. The topic will cover both advanced therapies already in clinical trials and innovative strategies undergoing translational research that merges contributes from a wide…