Welcome to our survey on FINTEPLA (Fenfluramine).

Fintepla is a medicine used in addition to other epilepsy medicines to treat seizures in patients from 2 years of age who have Dravet syndrome or Lennox-Gastaut syndrome, types of epilepsy that begin in childhood and continue into adulthood.

You can find more information on FINTEPLA (Fenfluramine) on the website of the European Medicines Agency website.

Epilepsy Ireland are making a submission to the National Centre for Pharmacoeconomics (NCPE) supporting the reimbursement of this medication. If the medication is approved for reimbursement, it would be made available under the Long-term Illness and Medical Card schemes etc.

Due to the medications indication, we are only seeking feedback from people living with Dravet Syndrome (DS) or Lennox Gastaut Syndrome (LGS) and/ or parents/ carers of individuals living with DS or LGS.

If you are living with or caring for a loved one with these rare conditions, your feedback is vital in ensuring the strongest possible case is put forward to support reimbursement of this important new medication in Ireland.

Please note that answers to all the questions below will be completely anonymous within our submission, and rest assured that we will not use your information for any purpose other than the NCPE submission.

Please try to be as detailed as possible in your responses and should a question not apply, please mark as N/A.

We would suggest that you read through the full set of questions on each page before beginning your answers – this may help in figuring where the best place is to make particular points. We have added some pointers in blue italics underneath the questions that may help you in answering.

If you need any assistance, please contact Paddy McGeoghegan, Epilepsy Ireland Advocacy and Communications Manager, by emailing pmcgeoghegan@epilepsy.ie.

Thank you again for your assistance.

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