Before spinal muscular atrophy (SMA): The Academy


Infos

Dates
May, 13-14, 2022
Prix
50€ all included - Online attendance: 10 €
S'inscrire

Two full days interactive training and discussion including lab visit, role play around diagnosis announcement, plenary lectures and round table discussion… Everything you wanted to know about Newborn screening (NBS) of spinal muscular atrophy (SMA) but you were afraid to ask.

About

Treatments for spinal muscular atrophy (SMA) have changed the course of the disease, especially in patients treated before the symptoms appear. Newborn screening (NBS) allows the earliest possible identification of affected children. Several studies have demonstrated the dramatic effect of treatment delivered in the first days of life. NBS programmes are developing rapidly around the world. We set up a pilot project in Southern Belgium (March 2018 - March 2021) which allowed us to gain hands-on experience on the organization and the clinical and psychological management of patients identified by NBS. This pioneered experience has given rise to 12 publications, and more than 40 communications in international conferences. Importantly, the program has been shared with 20 countries/region, and this leadership has conducted to a large survey of NBS in the world. We received on a weekly basis request of information about our concrete hand-on experience, and we recently felt that we should share it on a more systematic way than what peer-reviewed publications or formal presentations allow.

We have recently created an information brochure for parents of pre-symptomatically screened children. This brochure, which is generated to fit the number of SMN2 copies and the drugs available can be generated from a website that is free access for physicians. A video is also available for parents who prefer the “tuto style” than written information.

We want to go one step further in the sharing of our expertise in NBS and organize a “Screening Academy” in which HCPs from all over the world could take part. This event will be hybrid, F2F and remote, and if successful, could be reiterated.

This Newborn Screening Academy would be an opportunity to share our knowledge and the knowledge of Key Opinion Leaders in NBS in a direct formal and informal way, and to promote direct exchange and discussion about difficult cases.

Organizers and speakers

Organized by Pr. Laurent Servais, with a faculty of international Key Opinion Leaders:

  • Dr François Boemer, CHU Liège, Belgium
  • Dr Monika Gos, Institute of Mother and Child, Warsaw, Poland
  • Pr Mickael Hiligsmann, University of Maastricht, The Netherlands
  • Pr Jan Kirschner, University of Bonn, Germany
  • Pr Francesco Muntoni, UCL, London, UK
  • Dr Danilo Tiziano, University of Roma, Italy

Target audience

Child neurologists, newborn screeners, geneticists, care/program coordinators...

As long as you are/will be/would like to be leading of involved in a SMA NBS program, and feel that you still have several questions.

Cost

  • 50 € all included

Residual cost, including housing, travel (up to 600 euros), inscription... is covered by grants provided by our generous sponsors.

  • Online attendance 10 €.

In face-to-face & online

We want to privilege a face-to-face interaction with a group of max 20 participants, but all sessions will be filmed, streamed and broadcasted for those who attended on line..

We hope being able to accommodate all requests, but should we not be able, we will prioritise the most diverse audience in terms of origin, specialisation... and we will get a strong incentive to organise a second session.

REGISTER

Registration before February 14th.

Contact

Ms Tamara Dangouloff


Photo : © Shutterstock

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