EndoStats - Endometriosis Awareness
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Advocacy steps taken to bring awareness

12/2/2019 0 Comments

EndoStats joined the NCD Alliance ENOUGH campaign to ignite action on NCDs and endometriosis.

EndoStats joined the NCD Alliance's ENOUGH campaign and the Global Week for Action on NCDs to promote the lived experience. Julie Prilling joined as a campaign consultant for the NCD Alliance.
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5/7/2019 0 Comments

Working on updating the WHO: ICD-11 Codes for Endometriosis.

ICD-11 Codes define our global illnesses. These are important to understand global data and specialties involved. For the past 2 years, I spent over 200 hours collecting and submitting research, proposals and investigating the field of endometriosis to solve the inefficiencies of the descriptions. They are currently still in need of an update (and to have the correct medical credentials to defining them).
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9/27/2018 0 Comments

Joined over 300 organisations and experts to call on world leaders

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The absence of strong language on implementing the Best Buys, which focus on taxation, regulation and legislation, is a glaring omission from the document. This reflects interference and undue influence of health-harmful industries over a few countries who were prepared to shamelessly block progress for all. We are deeply disappointed that too few countries were prepared to stand up and show real leadership to put the health and wellbeing of their people ahead of the short-term and short-sighted economic interests of the few.  Full article.
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9/21/2018 0 Comments

Using endo voices and our stories to provide insight into NCDs and their impact for the United Nation's meeting.

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9/20/2018 0 Comments

Grateful to be part of this amazing group and to have endometriosis represented in amplifying voices for people with NCDs at the United Nations High-Level Meeting.

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6/28/2018 0 Comments

Women living with endometriosis unite to make their voices heard

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Julie Prilling, the designer and data scientist who created the EndoStats platform, shares her insight with the NCD Alliance on the urgent need to raise awareness of the illness and generate meaningful action.  Full article: NCD Alliance: ncdalliance.org/news-events/blog/women-living-with-endometriosis-unite-to-make-their-voices-heard
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4/18/2018 0 Comments

Enough! No decisions about me, without me.

When you, and well as, family, friends and children you know can have a better system, work becomes a purpose.
I'm grateful to have a voice at the table representing endometriosis advocacy and the communities voice to bring change to our healthcare system. We have the opportunity to change the lives of millions of women and girls around the world. Thank you to the NCD Alliance for listening and letting those who are impacted join the conversation as we prepare for the upcoming UN meeting.

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4/5/2018 0 Comments

Have you had ENOUGH? Let's join together and change policy by sharing our voices for the upcoming UN meeting on NCDs.

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4/1/2018 0 Comments

Patient petition and protest to ACOG for better standards for endometriosis

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We are at a time where patient advocacy is making waves to update the standard of care for endometriosis. One of the key issues in delayed diagnoses is a lack of knowledge among physicians, the petition claimed, citing an article on the ACOG: The American College of Obstetricians and Gynecologists website by its current president, Dr. Tom Gellhaus. In it, Gellhaus notes that 63 percent of general practitioners are not comforatable in diagnosing and treating endometriosis, and up to 50 percent are unfamiliar with the three main symptoms of the disease. “Educated patients, dedicated advocates, and expert endometriosis practitioners strongly believe that ACOG is not acting as a leader in endometriosis healthcare,” argues the petition, written by Casey Berna. “The lack of institutional leadership has caused suffering for patients in the form of delays in diagnosis and poor access to effectual care.”

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3/1/2018 0 Comments

March is Endometriosis Awareness month and the world has lit up in support as many march around the world.

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2/1/2018 0 Comments

Honored to advocate for endometriosis to be included in policy at for the 2018 UN NCD Meeting. The NCD Alliance invited 34 people living with NCDs from 22 countries to come together in Geneva for the Our Views, Our Voices campaign.

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12/1/2017 0 Comments

WHO ICD-Code 11 update to clarify Endometriosis

Endometriosis advocacy and experts are contributing to defining correct classification for endometriosis for the World Health Organization ICD-11 Codes. This will advance understanding into illness awareness, doctor skillset and insurance clarity.
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11/10/2017 0 Comments

WHO Health Literacy Community of Practice Group

The objective of the Health Literacy Community is to build expertise and improve the policy development process by gathering current and emerging information from all WHO regions and organizing it in one place. It provide a forum for community members to interact on the basis of those materials from time to time as the need arises.
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10/31/2017 0 Comments

Our Views, Our Voices campaign bringing endometriosis to NCD Policy

Endometriosis is a NCD - a noncommunicable disease that effects over 176 million women. People with illness are being part of the conversation over policy and action that influences their lives. I was fortunate to represent women with endometriosis with my story and health information in Geneva to define the agenda for updates to policy for the 2018 United Nations - High Level meeting. It was amazing working with this amazing bunch.
Workshop in Geneva: https://ncdalliance.org/news-events/news/together-we-are-stronger
NCD Alliance: ncdalliance.org/news-events/news/advocacy-agenda-of-people-living-with-ncds-takes-centre-stage
Data: public.tableau.com/profile/william.guicheney#!/vizhome/OurViewsOurVoicesOnlineConsultationResultsDraft2/Dashboard2
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9/1/2017 0 Comments

WHO's NCDs and me campaign shares stories of endometriosis

Personal stories reflect the need to have endometriosis join the conversation on NCD policy and action with the World Health Organization. SHARE YOUR STORY: apps.who.int/ncds-and-me/
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7/18/2017 0 Comments

Endometriosis and VR surgical simulation education

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Now that we understand that endometriosis can be found on every system of the body, there is an educational need to train Doctors to remove endometriosis from multiple organs. Laparoscopy and VATs virtual reality training could help women heal correctly and not have to have multiple surgeries due to skill. We are looking into ways to generate VR specific for endometriosis.

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5/13/2017 0 Comments

The microbiome and illness

The medical field is diving head on into the connection between your microbiome (Immune System) and chronic illness. Innovation is acceleration change. From gathering data and research to the understanding of diet and environmental factors that effect illness are being studied.
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5/7/2017 0 Comments

Extra-pelvic symptoms and awareness scale at the WEC 2017

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Endometriosis Info
Designed patient-centered information to educate Doctors on the the true depth at the World Congress for Endometriosis .
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3/21/2017 0 Comments

Patient-centered survey displayed the spread of symptoms and depth

Gathered patient-diagnosed data and symptom information to provide a platform and voice for the women and girls who feel there is a lack of understanding in the medical field with endometriosis.

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3/8/2017 0 Comments

NBC News - Women with Endometriosis Speak Out

EndoStats infographics were featured in the news story that voiced what women go through living with and fighting for awareness to the painful, crippling illness of endometriosis.

News Story: www.nbcbayarea.com/news/local/Not-Over-Until-I-Die-Bay-Area-Women-Speak-Out-About-Endometriosis-415696383.html
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3/1/2017 0 Comments

Teen Fashion Magazine, March 2017. Endometriosis Awareness

March is endometriosis awareness month and EndoStats was featured for teens to understand the invisible illness.
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12/15/2015 0 Comments

The film EndoWhat? that changed my life with Endometriosis

While doing research to understand what what going on with my health, Shannon Cohn brought to life what we endure in the medical field and society with endometriosis in the film EndoWhat.com. Supporting this production with Indiegogo and bringing awareness to thousands of women, professors and doctors.
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11/28/2015 0 Comments

EndoStats was created to simplify Endometriosis information

After being diagnosed in 2001 and then UN-diagnosed in 2015, I did my own research and discovered not only do I have endometriosis but also thoracic endometriosis. I thought I was rare but realized that 68% of women were being misdiagnosed. There are many myths about this illness out there and I wanted a place for women and girls to be able go to for honest, simple endometriosis information.
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