workshop – EJP RD – European Joint Programme on Rare Diseases

EJP RD Variant Prioritization and Enrichment for Rare Diseases Workshop

Onakoy Tanguy — Thu, 24 Aug 2023 08:38:44 +0000

Are you intrigued by the world of genetics and its role in uncovering mysteries behind rare diseases? If so, mark your calendars for the upcoming Variant Prioritization and Enrichment for Rare Diseases Workshop, a three-day immersive event that will equip participants with the knowledge and skills needed to navigate the intricate landscape of rare disease genomics. Hosted in the vibrant city of Istanbul, this workshop is set to take place from September 20 to 22, 2022.

Registration is open here until September 9th, 2023

More information here

Empowering Teenagers in Health Research: Join Our Workshop and Learn How to Make a Difference in Biomedical Research and Healthcare Services

Onakoy Tanguy — Wed, 19 Apr 2023 07:27:20 +0000

Attention teenagers aged 12-18 with an interest in health, biomedical research, healthcare, and children’s rights! Join our upcoming workshop to become an active contributor in scientific research and improve healthcare services for all patients.

21-23 June 2023
Barcelona, Spain
Deadline to show interest: 14 May 2023

Learn about drug development, children’s rights, and patient-centered approaches through case studies, practical activities, and discussions. Facilitated by pediatricians, investigators, psychologists, and patient representatives. Don’t miss this chance to make a difference in the world of healthcare!

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

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

EJP RD – ERN Workshop: RARE TOGETHER

Onakoy Tanguy — Tue, 06 Dec 2022 13:43:58 +0000

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: RARE TOGETHER” is being organized by Dr Rosanne Smits from Radboud University Medical Center.

The in-person event will take place on 8-9 May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands.

Registration is open here, and closes on February 1st.

The workshop, open to all research levels and aims to to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.

More information here

EJP RD – ERN Workshop: New Therapeutical Approaches for Inherited Retinal Dystrophies

Onakoy Tanguy — Wed, 23 Nov 2022 14:09:38 +0000

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “EJP RD – ERN Workshop: New Therapeutical Approaches for Inherited Retinal Dystrophies” is being organized by Dr Regina Rodrigo.

The in-person event will take place on 27-28 March 2023 at CIPF – Príncipe Felipe Research Center, Eduardo Primo Yúfera, 3, 46012, Valencia, Spain.

Registration is open here, and closes on December 31st.

The workshop, open for beginners and medium level researchers – junior physicians and scientists, will give an update on basic and translational research related to new therapeutic approaches for IRDs. It will bring together European experts and trainees to improve the training of young researchers on IRDs and latest therapies. Participants and speakers will involve representatives from ERN-EYE partners and non-ERN-EYE partners.

More information here

EJP RD – ERN Workshop: Epidermolysis bullosa: from genes to translation into therapies

Onakoy Tanguy — Fri, 28 Oct 2022 07:38:41 +0000

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Epidermolysis bullosa: from genes to translation into therapies” is being organized by Prof. Dr. Cristina Has of the University Hospital Freiburg.

The in-person event will take place on 23-24 March 2023 in CIBSS – Centre for Integrative Biological Signalling Studies in Freiburg, Germany.

Registration is open here, and closes on December 15^th.

The workshop, open for beginners and medium level researchers – junior physicians and scientists, will deliver expert knowledge on the following aspects of EB: clinical and genetic basis, wound and interdisciplinary management, how to design and conduct clinical trials, gene therapy, and models used in translational research. The aim is preparing the next generation of EB researchers.

More information here

TMEX – TRANSLATIONAL MEDICINE EXPLAINED 5 DAY WINTER SCHOOL 2023

Onakoy Tanguy — Mon, 10 Oct 2022 13:08:53 +0000

Registration is now open to the yearly 5-day course on “Translational Medicine Explained (TMex) ” on 13-17 February 2023 in Barcelona. The course is intended for PhD/MD students, postdocs and other young scientists who are involved in biomedical research and want to learn more about Translational Medicine.

The TMex (“Translational Medicine Explained)” Winter School consists of an introductory e learning (~12 hours student investment time) followed by a 5-day face-to-face workshop. The course is intended for PhD/MD students in the second half of their PhD and postdocs who are involved in biomedical research.

The full fee is of 650€. Special discounted fees of 475€ applies for EATRIS members and I2TRON students, and of 250€ for VHIR students and EUPATI fellows.

There are only 30 seats, so we recommend applying early (first come, first served). The registration will close when all seats have been filled. You will need to submit a biosketch and a motivation letter which will be reviewed by a selection committee.

More information here

ECRIN NSS Meeting: Identifying obstacles hindering the development of academic-sponsored trials for drug repurposing on rare-diseases

Loranne Charrier — Thu, 22 Sep 2022 13:45:25 +0000

As a continuation of the funding of an EJP RD NSS call, ECRIN is holding a two-day workshop and networking event in Prague on October 4^th & 5^th; the event will see the gathering of investigators involved in drug repurposing academic-sponsored trials for rare diseases, as well as other rare diseases clinical trial stakeholders.

To improve the existing treatments of those living with rare diseases, academic trials are conducted that focus on drug repurposing. Academic-led clinical trials face a number of challenges; some linked to the multinational nature of the rare disease research and others are more specific to the academia setting including lack of funding, inadequate infrastructures as well as processes to facilitate collaboration.

The workshop will look to identify obstacles hindering the development of academic-sponsored trials for drug repurposing on rare-diseases. The participants will work together to raise awareness of the difficulties encountered by the different stakeholder groups, promote future collaboration, suggest improvements for services and tools to support the community and impart existing supporting activities. By advancing academic clinical trials in drug repurposing, the workshop hopes to improve the treatment options for those living with rare diseases.

The article written as a result of the NSS meeting, which served as groundwork for the upcoming event, can be found here.

EJP RD “Bring Your Own Omics Data” Workshop pre-registration now open

Loranne Charrier — Wed, 17 Aug 2022 13:44:29 +0000

The EJP RD “Bring Your Own Omics Data” Workshop is now open.

The 2-day workshop will take place on November 17th and 18th 2022, face to face in Nijmegen (Netherlands). Costs for travel and accommodation might be available for participants from ERNs and EJP RD beneficiaries.

The “Bring Your Own Omics Data” (BYOOD) Workshop aims to help with optimising and integrating your omics data, initiate network analysis, and continue collaborations with the data analysis team.

In order to prepare the workshop and adapt it to your needs, please complete the pre-registration form by September, 2nd 2022 that you can find here.