FACs Forum

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A range of patient and representative groups came together to form FACS Forum Ireland in 2014, in response to the representations of Karen W Keely, a mother of three children affected by anti-convulsants.

The Forum aims to

Advocate for better warnings and information from the Department of Health in Ireland and related agencies

  1. on the side effects to expectant mothers of drugs that contain valproate, which is a widely used drug used mainly in the treatment of epilepsy and in bi-polar disorders.
  2. To seek better rights and supports for those families in Ireland who have been impacted by FACS.

 

The first priority of the Forum is to ensure no more mothers and their babies are impacted by FACS. The Forum also works to ensure that children, young people and adults with FACS and their families are sufficiently supported to deal with the wide range of problems that are associated with this condition.

 

The Forum pursues these priorities by raising awareness of the issue with government, policy makers, regulatory bodies, medical representative bodies and other professionals with a role in patient safety. It actively seeking adequate supports for people affected by FACs and their families.

  

Forum members:

Disability Federation Ireland (DFI)

Epilepsy Ireland (EI)

Genetic and Rare Diseases Organisation (GRDO)

Medical Research Charities Group (MRCG)

Organisation for Anti-Convulsant Syndromes Ireland (OACS Ireland)

Migraine Association of Ireland

Shine

 

For further information, please contact

Joan O’Donnell

Development Manager

Disability Federation of Ireland

01 454 7978

Joanodonnell@disability-federation.ie

 

 

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