FACS New Zealand

10/06/2026

FACSNZ had the honour to be asked by the Australian Government, to put in a written submission to the Senate who are doing an inquiry into epilepsy.

Did you know...that some of our medicines come from Australia and so have to comply with two different countries legislation.

Please do not share these without obtaining permission in writing from Denise Astill prior. Denise can be contacted via email [email protected]

07/04/2026

FACSNZ had another meeting with the Minister of Health and the Ministry of Health.

There have been wonderful achievements gained since having met with the Minister of Health last year, and we would like to thank him for that.

There is more coming out soon, and other work still being discussed.

31/03/2026

** A NEW FIRST OF ITS KIND IN NEW ZEALAND **

After 10 years we are celebrating as we have successfully managed to obtain a pregnancy cautionary advisory label (CAL) in NZ, which is the first of it's kind here.

The CAL will be used for 8 anti-seizure medicines, which are used for seizures, mental health conditions, migraines, neuropathy and pain. They are:
* carbamazepine
* ethosuximide
* oxcarbazepine
* phenobarbitone
* phenytoin
* primidone
* sodium valproate
topiramate

We would like to acknowledge and thank the Minister of Health, Simeon Brown MP, as without him this would not have happened.

Thank you to the Ministry of Health, Pharmaceutical Society, and Pharmacy Guild for implementing this very important initiative.

From 1 April eight anti-seizure medicines will be subject to a cautionary advisory label, warning of the risks associated with taking them during pregnancy.

29/03/2026

We are pleased to announce that Foetal Anticonvulsant Syndrome (FACS) is now on KidsHealth.

Fantastic to see more awareness happening.

Foetal anticonvulsant syndrome (FACS) can happen when a baby is exposed to certain medicines during pregnancy. Some medicines carry a higher risk than others. Planning ahead before a pregnancy happens, helps reduce the risk.

26/03/2026

Raising awareness is vital for diagnosis, support, prevention, and so much more.

Today is Purple Day (international epilepsy awareness day).
The Ministry has been working with Foetal Anti‑Convulsant Syndrome New Zealand (FACS New Zealand) to raise awareness of the risks associated with taking anti‑seizure medicines during pregnancy and the importance of having regular conversations with your healthcare provider.

We estimate 48,000 kiwis currently take these medicines for a range of health needs, including seizure disorders, such as epilepsy, migraine, supporting mood stabilisation, and managing nerve pain.

We've launched a set of tools — including an animation and lived‑experience videos — to help people understand the importance of talking with their healthcare provider about the medicines they take, and the potential risks some medicines can pose during pregnancy.

If you take one of these medicines and are planning to become pregnant, you should speak to your health provider first.

Watch the videos here:
youtu.be/Af89KdMSAFQ?si=OJbJu80FClzNRxoK
youtu.be/ulc3vd4flQ0?si=h_FbTT0b4QTVROev
youtu.be/jcMXcx7d87o?si=2deBTPZV7zk_8Phz

See below for further information about FACS and epilepsy (links in comments).

12/03/2026

Great night at Parliament for the launch of the Rare Disorders NZ white paper.

28/01/2026

FACSNZ has supported The Health Consumer Advocacy Alliance - Experts by Experience petition for a Patient Safety Commissioner.

We find it extremely disappointing that the Committee states: “We hope that the work of the Health and Disability Commissioner and [other health sector entities]… will help address systemic issues in the health sector.”

"Hope" is neither measurable nor accountable.

There are two other Patient Safety Commissioners in the world, being in the United Kingdom and Scotland. Both were set up in response to a review conducted around the devastating harm caused by valproate in pregnancy, primodos, and pelvic mesh.

The Health Committee’s final report is out, and it’s shockingly weak!
The Committee acknowledges there are serious well-documented systemic failures and then chooses to take no action at all. No recommendations. No accountability.

Here’s the clincher! The Committee actually says it “hopes” that our health entities "will help to address systemic issues in the system". Is this what we expect of the parliamentary process? Hope is not strategic policy!

After high-profile failures like the Manage My Health debacle, this actively undermines public confidence in Parliament’s willingness to hold the health system to account. Not to mention the plethora of serious health issues published in the media every day.

This report confirms what patients already know: the system does not work, and neither do the pathways meant to challenge it.

We published a Press Statement yesterday, read here: https://www.scoop.co.nz/stories/GE2601/S00045/health-select-committees-plan-cross-fingers-and-hope.htm

18/01/2026

It is fantastic to see that the Director-General of the Ministry of Health - Manatū Hauora, Audrey Sonerson has highlighted some of the new FACS tools available in her end of year newsletter.

https://ministryofhealthnewzealand.cmail19.com/t/i-e-zfdjhk-tkulbqdk-q

15/12/2025

FACSNZ will be out of the office from 17 December 2025 until 19 January 2026 having a well deserved break.

If you wish to email during this time you can on [email protected], but it will not be read or answered until after FACSNZ return back to work of the 19 January.

We want to wish all our FACSNZ community and supporters the best summer break.

Until next year. xx

14/12/2025

This year has been an extremely busy, and successful year for FACSNZ.

We thought we would share just some highlights, in no particular order.

Denise became an Officer of the New Zealand Order of Merit (ONZM) for all the work she has done both within Aotearoa, and internationally.

Both Jacki and Denise received The Collaborative Leadership Award from Rare Disorders NZ for the work they do for FACSNZ both within Aotearoa and internationally.

Jacki and Denise both met with the Minister of Health, Hon. Simeon Brown on a number of occasions, and as a result there is significant work that is being done for FACS within Aotearoa.

There has been a positive collaborative project ongoing for over a year with the Ministry of Health - Manatū Hauora and FACSNZ, which has been completed. It resulted in the following:

Media/publications:
• NZ Doctor https://www.nzdoctor.co.nz/article/undoctored/ministry-health-working-facsnz-raise-awareness-foetal-anticonvulsant-syndrome
• 1News https://www.1news.co.nz/2025/11/14/women-warned-over-meds-with-high-risk-for-serious-birth-defects/
• Ministry of Health website https://www.health.govt.nz/news/ministry-of-health-working-with-facsnz-to-raise-awareness-of-foetal-anticonvulsant-syndrome
• Healthify https://healthify.nz/health-a-z/f/foetal-anticonvulsant-syndrome
• Scoop https://www.scoop.co.nz/stories/GE2511/S00051/ministry-of-health-media-release-ministry-working-with-facsnz-to-raise-awareness-of-foetal-anticonvulsant-syndrome.htm
• Stuff https://www.stuff.co.nz/wellbeing/360886016/what-you-should-know-about-foetal-anticonvulsant-syndrome

Videos:
• https://youtu.be/sHmzDVnZ5h0?si=ZcIE2mh9wt3LgenR
• https://youtu.be/jcMXcx7d87o?si=KjNQLI5YkgUo9zvN
• https://youtu.be/ulc3vd4flQ0?si=_ZqEQ2bkaOB_JkTa
• https://youtu.be/Af89KdMSAFQ?si=1XJlA7kUHbvyTFyN

And more!!

We would like to thank our FACS community and everyone we have collaboratively worked with over the past year. It has been a massive one, but we are so excited about what has been achieved, and what is upcoming next year!

As we are a volunteer led organisation, if you can spare a few dollars to support the work we do then that would be greatly appreciated. Go to https://givealittle.co.nz/org/foetal-anti-convulsant-syndrome-nz

Kia kaha,
Denise & Jacki