ithaca

October 2021

ERN ITHACA Projects

EuroDysmorpho 2022

Following the success of the online EuroDysmorpho 2021, we are already planning our next edition which will be held face-to-face in Barcelona, from the 22th to the 25th of September 2022.
Regarding EuroDysmorpho 2021, you can now find our four expert talks as well as the abstract book on our website.

ERN ITHACA Annual Board

As you already know, our 2021 annual Board will take place in Madrid, from Thursday 9th to Saturday 11th of December. If you want to participate but have not yet expressed your interest, it is still time for you to do so by filling out this participation form by November 15.
We can also now share with you a provisional program for the Board.

Webinar#3 The Solve-RD Program

Our third webinar on the SOLVE-RD Program will be held on November the 30th, from 5 PM to 6.30 PM CEST. Solve-RD - "Solving the unsolved rare diseases" is a research project funded by the European Commission for five years (2018-2022) and the ERN-ITHACA is dedicating its third webinar to this program.

Program of the webinar:
  • Welcome and Introduction on SOLVE-RD - Dr Lisenka Vissers (Radboud university medical center Nijmegen, NL)
  • The impact of SOLVE-RD, ClinVar-based reanalysis of unsolved cases from the ERN-ITHACA Dr Anne-Sophie Denommé-Pichon (Dijon Hospital, FR) ; Novel gene discovery and functional follow-up RDMM, Dr Elke de Boer (Radboud university medical center Nijmegen, NL) ; OMICs integration, Dr Antonio Vitobello (Dijon Hospital, FR) ; Interactive discussion for questions with all speakers
  • Towards a sustainable SOLVE-RD future - How to share data to maintain the successes (RD connect) ; Ongoing efforts where HCPs can contribute, Dr Lisenka Vissers ; Round Table discussion & Conclusion, Dr Lisenka Vissers and Pr Laurence Faivre (Dijon Hospital, FR)
We would appreciate if you could fill out this form if you plan to participate in this.
Please do not hesitate to disseminate the link for the webinar:
https://u-paris.zoom.us/j/86058958813?pwd=djkzbXd6Zk94SXRqM1pJd0lPc2FvZz09

Connection details:
Meeting ID: 860 5895 8813
Passcode (if required): 719198

European News

ERICA | WP5 Translation and Innovation - Survey

ERICA is organizing a series of webinars and workshops on subjects meeting the RD community needs and with this survey, they wish to better understand the current research activities in the RD community, to identify the knowledge gaps and (educational) needs from the different ERNs and to find success stories that might help guide and support others in the areas of proof-of-concept stage, preclinical research, clinical research and drug development.
If you wish to participate, click here to answer the survey.

HORIZON PROGRAM | "Tackling diseases" Call

The Horizon Program "Destination 3: Tackling diseases and reducing disease burden" is launching a collaboration call on the development of new effective therapies for rare diseases. Deadlines are 01 February 2022 and 06 September 2022. We already have one initiative in our network from Dr. Laurence Faivre who wishes to coordinate projects around therapies for neurodevelopmental diseases. If you are interested in this joint call, please contact her at laurence.faivre@chu-dijon.fr.
To find out more about this call, you can visit the European Commission's website at this page.

News from EJP RD

EJP-RD logo

Horizon Europe Call for Proposals: Development of new effective therapies for rare diseases

As part of EJP RD’s support for rare disease research, multiple services are available to aid in the Horizon Europe Call for Proposals: Development of new effective therapies for rare diseases.
Data FAIRification: making resources Findable, Accessible, Interoperable and Reusable for humans and machines.
The Clinical Studies Support Office can assist with the design of clinical trials both in terms of project planning (site selection, cost evaluation etc) as well as study design (methodological and statistical methods).
Mentoring for translational research to design proposals from bench to bedside. Our range of experts can assist on a number of topics and review proposals to increase their impact.
More information here: https://www.ejprarediseases.org/horizon-europe-call-for-proposals-development-of-new-effective-therapies-for-rare-diseases/

Opening of the ERN Research Mobility Fellowship Call

The EJP RD Research Mobility Fellowships funding opportunity is now open until November 28th! The call aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
The exchange can be carried out within the same ERN (Full Members and Affiliated Partners), between different ERNs (Full Members and Affiliated Partners) and between ERN Full Members / Affiliated Partners and non-ERN institutions.
Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.
Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.
The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.
More information and application here.

ITHACA Upcoming Events :


- Webinar "The Solve-RD Program": November 30, 5.00-6.30 PM CEST

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