|
|
|
|
|
|
|
ERN-ITHACA Projects
|
|
New ERN-ITHACA call to join our Patient Board as an ePAG
|
European Patient Advocacy Groups (ePAGs) are essentiels to ERNs. Their mission is to be the voice of patients and their families in all the different projects carried out by ITHACA. Within our network, ePAGs and specialists, whether doctors or researchers, work hand in hand towards the same goal: improving the lives of those with rare malformative syndromes & neurodevelopmental disorders.
|
We are constantly striving to strengthen this patient-physician partnership, and to further build our ePAG community. A rich and efficient network of associations is a valuable tool for patients and their families.
|
You are part of an association of patients with the scope of ITHACA and would you like to represent your patient community at the European level? We're calling for applications to join our Patient Board to work with other associations and doctors on various projects.
|
Here are a few examples of the discussions to which you could contribute: a patient-clinician workshop to exchange perspectives on the transition of care from youth to adulthood next December in Dublin; a patient-clinicial round table on the theme of neurodevelopmental disorders in April 2024 in Lisbon; the drafting of various guidelines..
|
Thank you for spreading the word!
|
|
ERN-ITHACA Webinar #7 - recording available on website
|
|
|
|
Upcoming events
|
|
|
- July 6-7: ERICA General Assembly, Madrid, Spain & online
- September 13-16: EuroDysmorpho 2023, Lisbon, Portugal
- September 14-15: SSBP International Research Symposium, online
- September 21-22: 4th European Symposium on transition, Rotterdam, Netherlands
- October 11-12: EESC Conference on rare diseases and the ERNs, Bilbao, Spain
- October 16-18: 20th Manchester Dysmorphology Conference, United Kingdom
- October 20: First international conference on DDX3X syndrome, Paris, France
- December 7-9: ERN-ITHACA Board, Dublin, Ireland
|
|
|
|
European News
|
|
First international conference on DDX3X syndrome - October 20
|
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 families meeting on Saturday 21 October.
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.
Date: Friday 20 October 2023.
Time: from 09:00 to 17:30.
Place: Grand amphitheater of the GHU Saint Anne, 1 rue Cabanis, 75014 PARIS.
Pre-registration online HERE: free for families and students / 15 euros for professionals.
Provisional programme:
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)
The BINGO study (Brain and Behaviour In Neurodevelopmental Disorders of Genetic Origin)(Dr. Kate Baker, Great Britain)
Boys with DDX3X variants ( Dr Milou Kennis, The netherlands)
Clinical points and new therapeutic approaches (Dr. Elliott Sherr and Dr. Steven Gray, USA)
|
This conference is co-organised by the Xtraordinaire association, the DéfiScience and AnDDI-Rares rare disease health networks, with the support of the European ITHACA network and the American DDX3X Foundation.
|
|
|
WP5 Innovation Workshop on drug repurposing as part of the ERICA General Assembly - July 7
|
|
This workshop is part of the project ERICA GA Programme, and will take place on Friday, 7th July from 10:30 – 12:30. Participants can join the meeting in person or online, and should simply REGISTER HERE
|
|
In the first part of the workshop, we will showcase success stories from two different ERNs as an inspiration for the community. Eduard J van Beers from ERN EuroBloodNet will give talk about mitapivat story and building relations with biomedical industry into investigator-initiated research programmes, and Nicola Specchio from ERN EpiCare will talk about drug repurposing in epilepsy.
|
In the second part of the workshop, expert Donald Lo from EATRIS (REMEDI4ALL project) will lead interactive session on pathways in drug repurposing.
|
|
|
EURORDIS Webinar on mental health and wellbeing - July 13
|
EURORDIS is organising a webinar on the impact of rare diseases on mental health and psychological wellbeing.
In addition to sharing key talking points from the EURORDIS Membership Meeting Satellite Workshop on Mental Wellbeing, this is a chance to take stock of recent legislative developments in the field in the European Union and identify how we can use this refreshed political support to address mental health challenges across Europe.
|
More information about the program here.
|
Date: July 13, from 15.00 pm to 16.30 pm CET.
To register for the webinar:
|
|
|
4th European Symposium on transition - September 21-22
|
The European Symposium on Transition is an biennial conference where researchers and professionals can share their knowledge, learn, and empower each other to further improve transitional care for young people with chronic conditions or disabilities.
|
This year's meeting will focus on innovations and best practices in somatic healthcare, rehabilitation and mental healthcare, as well as what's the definition of successful transition.
|
|
Dates and place: September 21-22, Rotterdam, Netherlands
|
|
Deadline for registration: September 1, 2023
|
|
|
Approval of the EJP RD Innovation Management Toolbox asIRDiRC Recognized Resource
|
|
|
|
The EJP RD Innovation Management Toolbox (IMT), a library of translational medicine resources on rare diseases, has been accepted as an IRDiRC Recognized Resource.
|
|
|
EESC Conference on rare diseases and the ERNs: How to guarantee European solidarity for patients? - Save the date! October 11-12
|
The European Economic and Social Committee (EESC) under the auspices of the Spanish Presidency of the EU Council and in cooperation with the authorities of the Basque Country is organising a major Conference on Rare diseases and European Reference Networks (ERN). It will take place on 10-11 October 2023 in the Euskalduna Conference Centre in Bilbao, Spain,
|
|
The conference will review the state of play and address some of the main challenges facing the EU policy framework on rare diseases and European Reference Networks. Member States and civil society alike are keen to see progress in this field: accordingly, the conference will respond to calls for action from the Czech Presidency of the Council and to the previous political priority of the Trio, as well as to calls from patients' associations very active on the ground.
|
|
|
|
|
|
|
Registration for two upcoming ERN Workshops now open
** "CDH1 Related Hereditary Diffuse Type Gastric Cancer: the shift from prophylactic total gastrectomy to optimal endoscopic surveillance". Calling all experts interested in exploring the psychological, molecular, and administrative aspects of CDH1-related hereditary diffuse type gastric cancer! This workshop will offer invaluable insights into the latest research findings and best practices in patient care.
|
** "Urogenital Tissue Engineering from bedside to bench and back" which promises engaging discussions, insightful presentations, and valuable networking opportunities. Explore the intersection of urogenital tissue engineering, bridging the gap between clinicians' needs and the advancements in basic science.
|
|
|
|
|
|
|
Call for collaborative clinical research on developmental disorders
|
|
|
|
|
|
|
|
|
|
|
|
