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…

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…

ERN Workshop on future research on innovative diagnostics and interdisciplinary treatment for spina bifida (spinal dysraphism)

EJP RD News, News

In the context of EJP RD’s ERN Workshops, an in-person workshop titled « Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment » aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina…

ERN Workshop on endocrine cancer: A challenge in adults and children

EJP RD News, News

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on « Endocrine cancer: A challenge in adults and children » aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute. The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National…

ERN Workshop on anonymisation and pseudonymisation of rare disease patients⁠: Legal and technical aspects

EJP RD News, News

Topic: Anonymisation and pseudonymisation of rare disease patients: legal and technical aspects Date and Time: December 15th, 2021 from 15.00 – 16.00 CET. Organisers/Moderators : Franz Schaefer and Clémence Le Cornec Speakers: Spencer Gibson (University of Leicester), Guillaume Byk (DG-Santé – European Commission) and Antonio Cutillo (Joint Research Center) Description: This workshop will be the first of the…

EJP RD co-organises meeting on Domain specific Common Data Elements (DCDEs) Curation

EJP RD News, News

EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join. The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET. In…

RWE4Decisions Webinar: Delivering a Health Data Strategy for the European Reference Networks (ERNs)

News

RWE4Decisions, a multi-stakeholder initiative commissioned by the Belgian National Institute of Health, is organising a webinar entitled “Delivering a Health Data Strategy for the European Reference Networks (ERNs): Developing a Shared Vision with All Stakeholders” to discuss what a co-created Health Data Strategy for the ERNs could look like. The webinar will take place on September 29, 2021 from 16.00…

The EJP RD – ERN Research Training Workshops funding opportunity OPEN until October 4th!

EJP RD News

The ERN Research Training Workshops funding opportunity is now open for applications until October 4th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops…

ERN-Skin launches webinar series on rare skin diseases

News

The European Research Network for rare skin diseases (ERN-Skin) is launching a series of scientific webinars on rare skin diseases. Each 1-hour webinar will consist of a 30-minute presentation and a 30-minute discussion. The two upcoming webinars are: June 29th from 13.00 – 14.00 CET:  Genetic discoveries in ichthyosis – Keith Choate  Chaired by Juliette…