ERN Workshop on ectodermal dysplasias: Training course and update

EJP RD News, News

In the context of EJP RD’s ERN Workshops, a face-to-face training course on “Ectodermal dysplasias: Training course and update” aimed at informing and training participants in basic and practical aspects on Ectodermal Dysplasias (ED) and Incontinentia Pigmenti (IP) with specific focus on recent research update research and innovative care is being organised by Smail Hadj-Rabia of ERN-Skin, Department of Dermatology, Necker-Enfants Malades…

ERN Workshop: From high throughput sequencing to diagnosis in immune mediated disorders

EJP RD News, News

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “From high throughput sequencing to diagnosis in immune mediated disorders” aimed at educating young researchers and clinician on which techniques and functional tests are available and appropriate to solve challenging clinical cases in the field of immune mediated disorders and inborn errors of immunity (IEI) is being organised by the…

Networking Support Scheme (NSS) event: European Dravet Syndrome Advanced Therapies Meeting (EDSAT)

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A funded networking event titled « European Dravet Syndrome Advanced Therapies Meeting (EDSAT) » is being organised so that scientists can share first-hand information about their most recent advances in advanced therapies and Dravet syndrome research. In addition, attendees will learn from and discuss with guest industry regulatory and clinical experts in product and clinical development. This event has…

New Rare Care Centre will coordinate rare disease care at Perth Children’s Hospital (Australia)

News

On February 25th, a new Rare Care Centre was launched in Australia, which will provide a holistic model of care for children with rare and undiagnosed diseases. Based at Perth Children’s Hospital (PCH), the Centre has secured funding from leading Australian philanthropists and foundation, with a total commitment of 10 million Australian dollars over 5 years.…

Training for patient representatives and advocates on leadership and communication skills

EJP RD News, News

As part of the training activities proposed by EJP RD, an international course entitled « Training for patient representatives and advocates on leadership and communication skills » is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients…

International Summer School 2022: Rare Disease Registries and FAIRification of Data

EJP RD News, News

As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.…

ERN Workshop: Translational research on bone impairment in rare diseases

EJP RD News, News

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Translational research on bone impairment in rare diseases” aimed at giving an update on translational research on bone impairment in rare diseases and bringing together experts and trainees to facilitate collaborations is being organised by Justine Bacchetta of the Faculty of Medicine of Lyon. The in-person event will take place over…