National Conference on the Consequences of Sodium Valproate (Epilim): 50 years on

 For patients & families, healthcare professionals and policy makers

Organised by the Health Service Executive, Epilepsy Ireland, OACS Ireland, Trinity College Dublin and the FACS Forum

Friday March 22nd 2019
9.30am – 5pm

Stanley Quek Theatre
Biomedical Sciences Institute | Trinity College Dublin
152-160 Pearse Street | Dublin 2

 

Sodium Valproate (Epilim) is a medication used to treat epilepsy and bipolar disorder. The European Medicines Agency has restricted its use in women due to the increased risk of disabilities in children exposed to Valproate in the womb (Foetal Valproate Syndrome).

This conference will address the key issues today facing families, healthcare professionals and policy makers in:

  • The pharmacology of sodium valproate

  • Sodium valproate: Who knew what and when?

  • Reducing the risks associated with sodium valproate

  • Diagnosing and managing foetal valproate syndrome

  • Living with foetal valproate syndrome and the consequences of sodium valproate

  • The Irish Health Service’s response to the valproate problem

Speakers include:

  • Dr Colm Henry, HSE Chief Clinical Officer

  • Karen Keely, Chairperson, OACS Ireland

  • Dr Jeff Aronson, Clinical Pharmacologist, Centre for Evidence-Based Medicine, Oxford

  • Prof. Carl Heneghan, Director of the Centre for Evidence-Based Medicine, Oxford

  • Prof. Amanda Wood, Professor of Developmental Neuropsychology, Aston University, Birmingham

  • Dr Peter Turnpenny, Clinical Geneticist, Royal Devon & Exeter Hospital, UK

  • Prof. Andrew Green, Consultant Clinical Geneticist, Our Lady's Children's Hospital, Crumlin

  • Families affected by Foetal Valproate Syndrome

  • Members of the HSE’s Valproate Response project team

For further information, please contact:

Sabrina Doyle, HSE: 01 6352508 | sabrina.doyle@hse.ie

Review Team .png

Excellent news

OACS Solicitors Leigh Day


From OACS Solicitors Leigh Day are teaming up with David Body who ran the FAC Litigation which ended in 2010. David Body ought to be retired however he has come back to help us through this. The team are being joined by a selective group of legal experts in product liabiity and regulatory law.

The submission by INFACT via Mansfield does not have any bearing on what we are doing here. Both parties will lead to a submission to the Review. You may fill in their forms if you wish to - however the submission by OACS will encompass a wide range of arguments and has been seen to be such an important piece of work that lawyers are working round the clock pro bono. It will incorporate our views and experiences and the views of a wide range of stakeholders. This is not a closed and finite process.

Leigh Day have extensive expertise in Product Liabiility, Human Rights and Inquiries. We will be sharing some survey forms to fill in on specific issues.

Please share these as widely as possible. It will help if you first register on oacscharity.org 

 

Here is the link:

Thank you for your patience and apologies for the confusion and worry caused by it.

We are here to support all families touched by Fetal Anti-Convulsant Syndromes. OACS is the only patient led registered charity for Fetal Anti-Convulsant Syndrome in the UK and Ireland. 

 

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.

European Medicines Agency

Latest Review

Learn More About Epilepsy Here!

If you had medicine during pregnancy and wish to take part in research.......

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