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ERN-ITHACA Projects
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Workshop on Fetal and Postnatal multidisciplinary management in RD (MMC and LUTO) | Registration open
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The primary objective of this workshop is to train healthcare providers from different ERNs involved in the clinical research on urinary tract obstruction (LUTO) and Myelomeningocele (MMC).
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This workshop is scheduled over 2 days starting late afternoon on the day of arrival. A brief introduction will be provided by the organizers followed by the first common session in order to prepare the participants to the upcoming discussions (prenatal diagnosis, foetal treatment, post-operative monitoring of foetuses and mother, post-natal nephrological and urological management). The most relevant issues related to two pathologies (MMC and PUV) will be thoroughly discussed during the second day of the WK, e.g. foetal surgical procedures, specific postnatal surgery requirements and follow up.
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During the morning session on the third day the activities will be divided. Two working sub-groups will discuss practical cases and will work on the research projects in order to define new hypotheses as well as to critically evaluate the clinical trials.
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Fees: No fees; participants will receive financial support from the EJP-RD.
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Registration: HERE before April 16; 2023
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ERN ITHACA Webinar #7 " Speaking or not speaking, epilepsy or not epilepsy: is Rett syndrome a real monogenic disorder?" | Save the date!
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Chaired by Alessandra Renieri M.D., Ph.D., Professor of Medical Genetics, University of Siena Italy
The Rett syndrome spectrum is so wide ranging from severe neurodevelomental disorder to mild autistic feature that paradoxically the main diagnostic handle is on remote anamnesis of abrupt arrest. Striking phenotype will be showed together with molecular explanation
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The webinar will be held on Tuesday, May 9, 5h00-6h30 pm, French time.
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ERN ITHACA Webinar #6 " Innovation in newborn screening"
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ERN-ITHACA Webinar 6 was held last March online. The recording and powerpoint of the presentations are now available on the ERN-ITHACA website.
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EuroDysmorpho 2023 | Abstract submission
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Don't forget to submit your abstract for the EuroDysmorpho Meeting!
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Eurodysmorpho is open to any presentation in the field of human development: large series of patients or single, illustrative case reports.
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Deadline for submitting an abstract: May 26, 2023.
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Date of the event: September 13-16, 2023.
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Upcoming events
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- April 20-21: EuroNDD Workshop, Amsterdam, Netherlands
- April 24-26: Solve-RD Final Meeting 2023, Prague, Czech Republic
- March 9: ERN ITHACA, Teaching and Training Workgroup, Webinar "Speaking or not speaking, epilepsy or not epilepsy; is Rett syndrome a real monogenic disorder?"
- June 4-6: Trans-ERN Workshop on Fetal and Postnatal multidisciplinary management in RD (Myelomeningocele and LUTO), Krakow, Poland
- June 10-13: ESHG Congress, Glasgow, UK
- June 11: ERN-ITHACA Intermediate Board, Glasgow, UK, ESHG
- September 13-16: EuroDysmorpho 2023, Lisbon, Portugal
- October 16-18: 20th Manchester Dysmorphology Conference, UK
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European News
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Solve-RD Final Meeting
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The Solve-RD Final Meeting 2023 will take place from Monday to Wednesday 24-26 April 2023 in Prague, Czech Republic and online.
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See the full program HERE.
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Registration deadline for onsite participation: Monday, April 3.
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Registration deadline for online participation: April 23.
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DDX3X syndrome First International Conference
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The DDX3X Commission of the Xtraordinaire association is pleased to announce that the first international conference on DDX3X syndrome will be held in Paris on 20 October 2023, followed by a day for families on Saturday 21 October.
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The aim of the conference is to bring together doctors, families, researchers and all professionals in the field of care or educational support, in order to share knowledge and best practices, and thus encourage synergies.
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Round table discussion with families and health professionals: exchange on support practices in Europe.
Presentation of the French clinical study (Pr. David Geneviève and Dr. Valentin Ruault, France)
Language specificities of the syndrome (Pr. Angela Morgan, Australia)
Psychic signs in adolescence (Dr. Boris Chaumette, France)
Emotional difficulties (Pr. Diane Purper-Ouakil, France)
Presentation of the English BINGO study (Dr. Kate Baker, Great Britain)
Clinical points and new therapeutic approaches (Dr. Elliott Sherr and Dr. Steven Gray, USA)
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EJPRD Leadership and Communications Skills training for patient advocates
Develop your leadership skills in Poland… with your accommodation and meal costs covered!
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Apply now to receive one of the 21 fellowships on offer for the #EJPRD Leadership and Communications Skills training for patient advocates. Your accommodation and meals during training hours will be covered, as well as up to 435€ of travel costs. We are committed to ensuring that our training is accessible to patient representatives and advocates from all backgrounds, with those from Eastern Europe particularly encouraged to apply.
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🚨 Fellowship applications are open until 26th April 2023.
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Call for collaborative clinical research on developmental disorders
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