ERN-Research (ERICA) – EJP RD – European Joint Programme on Rare Diseases

EJP RD & ERICA Joint Conference – Recordings

Onakoy Tanguy — Wed, 13 Dec 2023 13:19:16 +0000

The ERICA & EJP RD Joint Conference was held on November 21st, 2023, in Amsterdam. This event aimed to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It brought together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases.

Recordings of the event are available here!

ERICA & EJP RD Joint Conference in Amsterdam

Madeline Chatel — Mon, 21 Aug 2023 09:35:17 +0000

The ERICA & EJP RD Joint Conference is scheduled for November 21st, 2023, in Amsterdam. This event aims to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It will bring together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases.

A pre-conference dinner on November 20th provides a networking opportunity. The conference signifies collaboration and knowledge exchange in the realm of ERNs and rare disease research.

More information here.

New training: ERN biological samples in Rare Diseases research: Added value and usefulness

Onakoy Tanguy — Fri, 07 Apr 2023 10:24:13 +0000

A new EJP RD training course called “ERN Biological Samples in Rare Diseases Research” is set to take place on June 12th in Madrid, Spain, aimed at biomedical researchers, medical professionals, and biobank managers.

The course will cover the path to follow for exploiting the high value of the ERNs (European Reference Networks) biological samples repositories in the rare diseases (RD) research.

Attendees will learn about the role of ERNs samples and how to optimize them for networking and research networks.
Don’t miss this opportunity to enhance your knowledge and skills in the field of rare diseases research!

More information here

New EJP RD – ERN Workshop on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)

Onakoy Tanguy — Wed, 22 Mar 2023 14:30:03 +0000

In the context of EJP RD’s ERN Workshops, a workshop on “on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)” is being organized by Giovanni Mosiello, Rafal Chrzan, Jean Marie Jouannic, and Giovanni Montini.

The in-person event, which aims to train healthcare providers from different ERNs involved in the clinical research on MMC and LUTO, will take place on 4-6 June 2023 in Krakow, Polad.

Registration is open here, and closes on 16 April 2023.

This workshop is addressed to healthcare providers working together with ITHACA, eUROGEN and ERKNet: Foetal surgeon, neonatologist, nephrologist, neurosurgeon, obstetrician, radiologist, paediatric urologist who are involved in the management of MMC and LUTO might be interested to participate in this event. The workshop might be of a great value for all ERN researchers.

More information here

DEADLINE EXTENDED: EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)

Onakoy Tanguy — Thu, 16 Mar 2023 15:31:19 +0000

The deadline for the “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” EJP RD- ERN Workshop has been extended until March 24th. Registration is open here.

The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia.

This workshop is addressed to clinical geneticists, laboratory geneticists, breast surgeons, gynecologists, oncopsychologists, public health specialists, medical oncologists, radiologists, radiotherapists, pathologists – employees or affiliated to an ERN-Full Member or affiliated Partner institution.

More information here

Webinar: Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation

Onakoy Tanguy — Wed, 15 Feb 2023 13:28:58 +0000

ERN eUROGEN and ERNICA are organising a 1-hour webinar entitled “Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation” on February 22nd, 2023 at 18:00 CET.

Registration is open here

In this webinar aimed at healthcare professionals, Dr Sonia Pérez-Bertólez and Dr Oriol Martín-Solé, Consultants in the Department of Paediatric Urology at Hospital Sant Joan de Déu Barcelona (ES), will review the endoscopic technique step by step, its indications and the results of endoscopic treatment of primary obstructive megaureter, used at their centre as the first treatment option since 2007.

Reviewing over 50 patients treated at their centre from 2007 until now, with long-term follow-up in most, they will expose the main risk factors for treatment failure and the need for reimplantation after endoscopic treatment.

Those who attend the webinar live will receive a Certificate of Attendance (unaccredited).

ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial

Onakoy Tanguy — Fri, 10 Feb 2023 08:17:29 +0000

The European Rare Disease Research Coordination and Support Action consortium (ERICA) is organising the WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” in collaboration with EJP RD and ERN BOND. This webinar will provide you with an overview of what should be done before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.

Registration is open here until February 26th.

Speaker: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

More information here.

EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)

Onakoy Tanguy — Wed, 08 Feb 2023 08:59:42 +0000

In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by Rīga Stradiņš University.

The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia.

Registration is open here, and closes on February 22nd.

More information here

ERN Webinar: Patients with Trisomy 21 and ARM Versus Patients with ARM Without Fistula

Onakoy Tanguy — Wed, 08 Feb 2023 08:25:05 +0000

ERN eUROGEN are organising a webinar dedicated to healthcare professionals and patient groups on Wednesday, 8 February at 18:00 CET. Dr Eva Amerstorfer, Consultant (Department of Pediatric and Adolescent Surgery, University Hospital Graz, AT) and Dr Inbal Samuk, Director of Colorectal Services (Pediatric and Adolescent Surgery Department, Schneider Children’s Medical Center, Petah Tikva, IL) will present this webinar.

About 5% of children with Trisomy 21 are born with an ARM, which in up to 95% of patients is classified as an ARM without fistula. ARM without fistula is itself a rare, distinct anomaly in the spectrum of anorectal malformations and occurs in 5% of all patients with ARM.

Features of this type of anomaly will be described, as well as the results of a study conducted by the ARM-Net Consortium on the clinical characteristics and one-year outcome of patients with Trisomy 21 and ARM and patients with ARM without fistula. Management and outcome parameters will be compared between these patient groups.

While both patient groups require special attention in their management, treating physicians need to be aware of associated pathologies in patients with Trisomy 21, which can influence bowel function and outcomes.

New EJP RD – ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach

Onakoy Tanguy — Mon, 23 Jan 2023 08:35:37 +0000

In the context of EJP RD’s ERN Workshops, a workshop entitled “Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach” is being organized by Dr Marco Vitelarro.

The in-person event will take place on 22-23 May 2023 at Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, in Milano, Italy.

Registration is open here, and closes on March 7th.

This workshop is addressed to physicians, researchers from ERN Full Members or Affiliated Partners from the junior to senior level.

More information here