awareness

National Action Plan for Endometriosis Officially Launched!

I’m holding Australia’s (maybe the world’s?) first ever National Action Plan for Endometriosis 😆😆 just launched by Greg Hunt MP .

A few months ago I was sitting at the Roundtable Meeting in Melbourne with 40 other experts in the field of endo, sharing all your stories, your wants, your needs, what WOMEN AND GIRLS WITH ENDO want and need, and all my ideas for solutions to the enormous public health issue that is #endometriosis.

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Endo promised MILLIONS by the Australian Federal Government!

HOLY GUACAMOLE 🥑 !!! What an INCREDIBLE day!!!!. For 8 hours we (EndoActive and our newly formed peak body, the Australian Coalition for Endometriosis (ACE) ) have worked with 30 of Australia’s best experts in Endometriosis to craft the National Action Plan for Endo.

Minister Greg Hunt was there and gave another brilliant speech. He asked me not to repeat this bit but when he spoke to his wife about bringing attention to endo, she said, “ABOUT BLOODY TIME!” 👏🏼👏🏼👏🏼

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EndoActive & endo groups form the Australian Coalition for Endometriosis (ACE) to inform the federal government on policy change for Endometriosis

Did my first live interview with ABC News last night on endometriosis. Didn’t plan on wearing my hi-vis jacket but they said my top was see-through so… Here’s my interview moments before lobbying the government and giving my speech to Minister for Health, Greg Hunt MP

EndoActive features in Latte magazine by Business Chicks, July 2015

Although this article in Latte was from July 2015 – it was a great awareness piece on endometriosis.  A huge thanks to Business Chicks for featuring EndoActive and providing important health information about endo.
Click through to read the full article.

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Syl speaks at Health Informatics Conference in Melbourne

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Hey EndoActivists,
Here I am talking about Endometriosis to a packed auditorium of hundreds of people a few weeks ago. I was in Melbourne speaking at HISA’s Health Informatics Conference as a patient advocate who has used social media to create an online community of wonderful women and raise awareness of Endometriosis.

It wasn’t long ago that I was slumped on the couch day after day in chronic pain, miserable as hell, consumed by sadness and anxiety, with no hope for the future. Becoming an activist and a patient advocate has completely turned my life around. I never ever ever would’ve imagined that the disease that was once destroying my life would now be my Ikigai – a Japanese word meaning  ‘reason for being’ or reason to get up in the morning.

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Bayer collaborates with Evotec for new Endometriosis treatment

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EXCITING NEWS FOR ENDOMETRIOSIS PATIENTS AND ACTIVISTS!

Yesterday I got notice of a collaboration between pharmaceutical company Bayer and Evotec regarding treatment of Endo.

With not much other information it’s easy to be cynical of this news. Of course this treatment won’t be a cure. Of course both parties will be interested in making a profit – such is the way of the world. And that’s ok.

I’m not sure whether this treatment option will be helpful or not. Let’s hope that it is.

BUT – I’m so so excited by this news because it is a sign that Endo is being recognised as a serious health issue costing billions of dollars in lost productivity a year. It shows that big pharma is willing to put money into Endo and without their financial support and investment, no progress will be made. As a close friend of our told me on the phone this morning – researchers and scientists can beaver away doing their wonderful work all their lives but without funding, that research and science will stay in the universities and the labs. That work will stay in silos.

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My beliefs, my dreams & the story of EndoActive.

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Hey guys. Today I want to share with you my beliefs, my dreams for EndoActive and our story – why we’re here. It really is an incredible one and it involves all of you, so please, please read to the bottom. <3

My name is Syl Freedman, I’m 25 and I have Endometriosis. We call it Endo.

My Mum, Lesley, and I started EndoActive in August 2014 after campaigning to have a medication used to treat Endo available here in Australia. We got 75,000 signatures on our online petition (thanks to many of you for signing!!) and amazingly, we were successful. Visanne was released in Australia in March 2015.

It has helped many women, myself included, to finally live a life free of pain and most importantly, provided another treatment option for Endo.

After achieving the impossible, we had a fire in our bellies and felt determined to keep going.

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