The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25,000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged). 

The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. 

Application, organiser’s profile, and more: https://www.ejprarediseases.org/ern-research-training-workshop/

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases” aimed at facilitating discussion and exchange of knowledge on the M&S methodologies and strategies as innovative and promising enough for facing complex multifactorial or rare diseases and conditions that require highly specialised treatments and resources is being organised by Donato Bonifazi of the Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF).

The in-person event will take place over two days on July 4th – 5th at the Hotel Excelsior in Bari, Italy.

The workshop is open by prior registration and selection to PhD students, post-doc researchers, senior scientists, young clinicians, investigators and academics and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

The training workshop is free of charge and the training methodology will be based on lectures, seminars, and practical sessions, aimed at providing concrete research skills.

Registration closes on May 10th, and those selected to participate from among the applicants will be informed by May 23rd of their selection.

More information and registration here: https://www.ejprarediseases.org/event/modelling-simulation-research-methodologies-for-small-populations-in-rare-diseases/

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Functional exploration of genetic variants in cardiac diseases” aimed at presentation of functional explorations of variants of interest identified using Drosophila, C. elegans, Zebrafish and iPSc models to understand the molecular bases of genetic diseases, in particular heart and muscle diseases, is being organised by Philippe Chevalier of the Hospices Civils de Lyon.

The in-person event will take place over two days on June 14th – 15th at the Hospices Civils de Lyon in Lyon, France.

The workshop is open by prior registration and selection to cardiologists, molecular biologists, post-docs, medical fellows, and PhD students and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

The training workshop is free of charge and consists of interactive presentations and discussions.

Registration closes on May 1st, and those selected to participate from among the applicants will be informed by May 9th of their selection.

More information and registration here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-functional-exploration-of-genetic-variants-in-cardiac-diseases/

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Comprehensive gene profiling, molecular tumor board (MTB) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers” aimed at increasing physicians’ awareness on the possibilities of comprehensive genomic profiling in gene-guided planning of modern cancer treatment and addressing multidisciplinary aspects between specialists who are working in ERN-EURACAN and GENTURIS is being organised by Pia Vihinen of the FICAN West Cancer Centre and Turku University Hospital.

The in-person event will take place over two days on September 29th – 30th at the FICAN West Cancer Centre and Turku University Hospital, Turku, Finland.

The workshop is open by prior registration and selection to physicians and cancer researchers who want to deepen their knowledge in working within MTB and innovative genomic profiling and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

The training workshop is free of charge and consists of lectures and discussion. Participants are encouraged to bring their own patient cases, which will be presented and discussed during the workshop. There will also be interactive panel discussions.

Registration closes on June 2nd, and those selected to participate from among the applicants will be informed by June 20th of their selection.

More information and registration here: https://www.ejprarediseases.org/event/comprehensive-gene-profiling-molecular-tumor-board-mtb-and-artificial-intelligence-in-the-diagnosis-and-treatment-of-patients-with-rare-adult-cancers/

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 Hospital.

The in-person event will take place  on June 10th at the Necker-Enfants Malades Hospital in Paris, France.

The workshop is open by prior registration and selection to residents in dermatology, ophthalmology, dentistry, surgery, neurology, general practice, pediatrics, researchers, and patient representatives who are employees of or affiliated to an ERN Full Member or affiliated Partner institution. 

The training workshop is free of charge and consists of participation in the conference with other specialists (with feedback on their observation and key learnings of the day) as well as classes on ED and IP. Real-life situations and ill-defined problems will be proposed. If the course is restrained by the pandemic situation, it will be made available as a webinar.

Registration has been extended to May 2nd ! Registration closes on April 14th, and those selected to participate from among the applicants will be informed by April 30th of their selection.

More information and registration here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-translational-research-on-bone-impairment-in-rare-diseases/

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 Genetics Working Party (WP) of the European Society for Immunodeficiencies (ESID) together with the Molecular Testing Working Group (WG) of ERN RITA.

The hybrid event (in-person with an option to participate online) will take place over two days on May 30th – 31st at the Imagine Institute, 24 Boulevard du Montparnasse, Paris, France.

The workshop is open by prior registration and selection to clinical and laboratory immunologists, internist-infectiologists, pediatricians, geneticists and pediatric and adult rheumatologists who are employees of or affiliated to an ERN Full Member or affiliated Partner institution. 

The training workshop is free of charge and consists of interactive presentations and discussions on different areas of interest.

Registration closes on April 14th, and those selected to participate from among the applicants will be informed by May 2nd of their selection.

More information and registration here: https://www.ejprarediseases.org/event/from-high-throughout-sequencing-to-diagnosis-in-immune-mediated-disorders-esid-ern-rita-workshop/

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 two days on June 9th – 10th at the Faculty of Medicine of Lyon in Lyon, France.

The workshop is open by prior registration and selection to senior scientists, senior physicians, postdocs, medical fellows, and PhD students who are employees of or affiliated to an ERN Full Member or affiliated Partner institution. 

The training workshop is free of charge and consists of interactive presentations and discussions on different areas of interest. On the second day, a “meet the experts” session will encourage small group talks, exchanges, and networking.

Registration closes on May 1st.

More information and registration here: https://www.ejprarediseases.org/event/ejp-rd-ern-workshop-translational-research-on-bone-impairment-in-rare-diseases/

The face-to-face event (in-person on site) will take place over two days on March 31st – April 1st, 2022 at the Centre Hospitalier Universitaire de Rennes in Rennes, France.

The workshop is open by prior registration and selection to geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians who are employees of or affiliated to an ERN-Full Member or affiliated Partner institution. 

The training workshop is free of charge. The workshop will consist of interactive presentations and discussions on different areas of interest.

Registration closes on February 4th, 2022 and those selected to participate from among the applicants will be informed by February 15th, 2022 of their selection.

More information and registration here: https://www.ejprarediseases.org/event/trans-ern-working-group-for-spina-bifida-spinal-dysraphism-workshop-for-future-research-on-innovative-diagnostics-and-interdisciplinary-treatment/

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 Research Institute in Gliwice, Poland.

The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an ERN Full Member or affiliated Partner institution. 

The training workshop is free of charge.  Travel and hotel expenses will be reimbursed for all selected (max 20) ERN participants. Lunch and dinner will be provided on site for all participants.

Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 28th, 2022 of their selection.

More information and registration here: https://www.ejprarediseases.org/event/endocrine-cancer-a-challenge-in-adults-and-children/

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 ERN data strategy workshop series. During this first workshop, we will discuss the techniques and algorithms to anonymise and pseudonymise healthcare data from patients with rare diseases. A special focus will be given to the challenges associated with preserving the privacy of patients with rare diseases. The advantages and drawbacks of pseudonymised and anonymised data both in terms of research outcomes and privacy protection level will be discussed. Finally, in relation with the GDPR regulation, the legal implications of sharing anonymised and pseudonymised data with external stakeholders will be examined. Following these presentations, an open discussion and a Q&A session will be held to address open questions.

Agenda:

More information and registration here: https://erica-rd.eu/event/pseudonymisation-and-anonymisation/