Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.
-
Upload
rudolf-skinner -
Category
Documents
-
view
216 -
download
0
Transcript of Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.
![Page 1: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/1.jpg)
S
Scientific Advisory BoardFragile X
Monday November 24th, 2014
Olivier Crevoulin & François Rycx
![Page 2: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/2.jpg)
Introduction
Round table - intro
Simply using your native language
Feel free to intervene at all time – this is your meeting
![Page 3: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/3.jpg)
Agenda
Debriefing Oct 10 conference: key takeaways, lessons learned
Feedback on 18 000 postcards sent to all doctors & paediatricians
14th Fragile X conference of the NFXF (Los Angeles, July 2014)
Consensus documents of the Fragile X Clinical & Research Consortium (FXCRC)
Clinical trials: debrief Novartis & Roche failed trials & upcoming tests
Any other topics you would like to raise
![Page 4: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/4.jpg)
Feedback & lessons learned from SABFeedback from XFB and families
Copies of slides on your deskHow to attract more professionals?
Conference X-X-2014
![Page 5: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/5.jpg)
Feedback & lessons learned from SABFeedback from XFB and families
How to make the most out of it? How to create buzz? Sent to your students?Similar initiatives in preparation in France; next steps in Belgium?
Postcard awareness campaign
![Page 6: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/6.jpg)
Clinical TrialsQuestionnaire R. HagermannMedical problems in Fragile X Syndrome - Database from FXCRC
14th International Fragile X Conference
http://www.fragilex.org/community/international-fragile-x-conference/
![Page 7: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/7.jpg)
S
Consensus Documents from the FXCRC
What is this ?How to make the most out of it ?How to share them with professionals ?Translate in Dutch & French ?
![Page 8: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/8.jpg)
Update from our associations
France, Nederland, Nordics, Germany, Spain, Italy, UK, Portugal, Switzerland, …
Belgium :
![Page 9: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/9.jpg)
S
Latest News to share?Round table
Next meetingsProposed dates :
Monday May 4, 2015November 2015, tbd
![Page 10: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/10.jpg)
S
Thank you!Your personal commitment makes the difference and gives
hope to families
![Page 11: Scientific Advisory Board Fragile X Monday November 24th, 2014 Olivier Crevoulin & François Rycx.](https://reader036.fdocuments.net/reader036/viewer/2022062519/5697bfc91a28abf838ca91e8/html5/thumbnails/11.jpg)
Association X fragile Belgique
Website:www.x-fragile.be
Facebook: https://www.facebook.com/AssociationXFragileBelgique
Contact for SAB:Olivier Crevoulin – [email protected] – 0477 81 13 18François Rycx – [email protected] – 0496 57 35 19