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To: Minister for Health Stephen Donnelly

Fight for Fenfluramine

Dear Minister Donnelly,

It has caused me, my family and many others in the dravet community  much agony and grave concern to learn that you are the main person who causes the children of Ireland with Dravet Syndrome further suffering as you withhold the public funding for Fenfluramine. Fenfluramine is widely available and publicly funded in many other European countries like France, Italy, Spain, Germany, and the United Kingdom.


Dravet syndrome is  a rare and severe form of infantile epilepsy that carries an increased risk of mortality. Evidence shows that fenfluramine reduces that risk and improves quality of life for children who have horrific seizures. How can you justify continuing to impose further suffering on children with Dravet Syndrome in Ireland?

We call, with immediate effect, for you, Minister Donnelly, to approve funding for fenfluramine for children with Dravet Syndrome in Ireland.

Why is this important?

Together, as one family, we can help stand with dravet children and their families' right to access Fenfluramine to help reduce their child's seizures by 75%. Each signatures means a great deal to this campaign, please sign and stand with us.
Ireland

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Updates

2024-10-02 12:02:51 +0100

500 signatures reached

2024-09-30 09:53:38 +0100

100 signatures reached

2024-09-30 07:00:37 +0100

50 signatures reached

2024-09-30 00:06:27 +0100

25 signatures reached

2024-09-29 23:20:18 +0100

10 signatures reached