OACS Charity
Organisation for Anti-Convulsant Syndrome
Registered Charity No. 1116497
UK Helpline: 07904 200364
Email: oacscharity.org@gmail.com
Support
We are here to support all families touched by Fetal Anti-Convulsant Syndromes. OACS is here to ensure that people living with FACS and their families will experience better recognition, improved public health services, and support.
Fetal Anti-Convulsant Syndrome is caused when the anti-convulsant medicine a woman takes during pregnancy affects the foetus. It is not yet understood why this affects some children and not others, but it is believed may be due to a genetic disposition.
How We Can Help
We are here to support all families impacted by Foetal Anti-Convulsant Syndromes (FACS). Foetal Anti-Convulsant Syndrome is caused when the anti-convulsant medicine a woman takes during pregnancy affects the foetus.
FVS - Foetal Valproate Syndrome is a range of devastating birth defects that can occur from the side effects of taking an anti-epilepsy or other drugs which contain valproic acid (VPA) during pregnancy. Despite studies dating back to the 1980’s, both industry and national governments across the world (including Ireland), were slow to act on overwhelming evidence of the side effects of such drugs, including Epilim.
Have you had your Annual Valproate Review from your GP or Neurologist?
If you haven't please click on the link below and contact you Health Care Professional for a medication review.
Do not stop taking your medication without talking to a Epilepsy Health Care Specialists!
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Participants Needed Urgently for Parental Valproate Exposure Study
You are being invited to take part in a research study exploring maternal and young person views regarding the long-term health and development of individuals with Fetal Valproate Spectrum Disorder and Fetal Valproate Syndrome. Please note that this research includes families of children who have been diagnosed with Fetal Valproate Spectrum Disorder or Fetal Valproate Syndrome but we will use the more current term, Fetal Valpraote Spectrum Disorder, in this study to refer to both groups.
Before you decide whether to take part, it is important for you to understand why the research is being conducted and what it will involve. Please take time to read the following information carefully before deciding whether to take part and discuss it with others if you wish. You can also get in touch with us with any questions you may have about the study (matthew.bluett-duncan@manchester.ac.uk). Thank you for taking the time to read this.
IMMDS Review into #Valproate
#First Do No Harm
"We welcome the review report and thank them for the commitment to finding the truth and putting together comprehensive changes to the health and social care.
“What we should remember is this is just the beginning and for any justice for our children we require a task force to comprise of, at least one representative from each patient groups, to set up a redress scheme that covers the social care, health, education and to secure a financial future for all victims past and present.
“Until this is achieved, we will carry on fighting and expect that all state bodies will find the lost children of Sodium Valproate from time of licensing.”
Rare Connect is a Global Support Community, set up for everyone with rare syndromes for sharing their stories with other families across the world in the same situation as you are in and making new friends along the way.
OACS has a growing community page you can join for free today: Fetal Anti-Convulsant Syndrome' Community www.oacscharity.org
The information provided by OACS is to empower so that those taking anti-convulsant medicines can make informed choices about the medication that is used during pregnancy. It is important to speak to your doctor before choosing to stop or changing any medication
© Copyright of Organisation of Anti-Convulsant Syndrome (O.A.C.S) 2/2014 Registered Charity no. 1116497