Before SMA: The Academy (Juin 2024)
Infos
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 14 publications, and more than 40 communications in international conferences. Importantly, the program has been shared with 25 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 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.
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 F2F only.
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 Danilo Tiziano, University of Roma, Italy
- Dr Renske Wadman, University of Utrecht, Netherlands
- Dr Tamara Dangouloff, University of Liege, Belgium
- Dr Aurore Daron, University of Liege, Belgium
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.
In face-to-face
We want to privilege a face-to-face interaction with a group of max 20 participants.
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.
