The CONNECT Collaborator Series is an interview series where we host conversations with healthcare professionals and partners with the goal of encouraging deeper collaboration in the healthcare industry.
Watch the full CONNECT Collaborator Series video featuring our Co-Founder, Lorie Spence and the Executive Director at The Endometriosis Network Canada, Katie Luciani.
Lorie Spence: Welcome to the Connect Collaborator interview series, where we host 10 minute conversations with healthcare professionals and partners with the goal of encouraging deeper collaboration in the healthcare industry. Today’s guest is Katie Luciani, Executive Director at The Endometriosis Network Canada. Katie has been the driving force as the Executive Director since 2019, and passionately supporting the endometriosis community since 2014. Katie herself lives with endometriosis, with symptoms since she’s been 11 years old, but was not diagnosed until 27 years old. In Katie’s leadership role at The Endometriosis Network Canada, she has managed nationwide endometriosis awareness events, connected with numerous patients across the country, and facilitated and co-facilitated in person, virtual, and online support groups. More recently, Katie led the development of a proposal project that secured historic funding for endometriosis awareness and education in Canada. Welcome Katie, and thank you for joining us.
Katie Luciani: Thank you so much for having me.
Lorie Spence: So maybe you can just tell us a little bit about your personal journey with endometriosis and how this led you to navigate for others, and led you to Executive Director for The Endometriosis Network?
Katie Luciani: Symptoms for myself personally showed up at the age of 11, and I didn’t receive an official diagnosis until the age of 27, so you can imagine that’s quite a large chunk of my life not knowing what was wrong with me, having an answer, having sort of any type of support or kind of acknowledgement of like, what’s happening with my body. And so, it was actually through finding a support group, which was The Endometriosis Network Canada, that I took the leap and I attended, not knowing anybody, and I can absolutely say that taking that leap and going to that support group changed my life, changed the trajectory of my life. I was in a very dark place, I was very lonely and not sure, and meeting other people that were going through similar situations was life changing. Being told that I’m not alone, that there’s answers to what’s going on. It changed my path completely, and sort of led me down the path of wanting to give back to this incredible organization, volunteer with this organization, and sort of how the path of where I’m at today and what we’re doing today has all sort of come together.
Lorie Spence: I know the network has quite a large following and community, but maybe you can elaborate on the four pillars of Support, Education, Awareness and Hope, and really what this means for your stakeholders.
Katie Luciani: Something that’s very unique about The Endometriosis Network Canada is that there’s very much patient involvement. We’re a patient led charity, and so within those four pillars, everything that we do, that is brought into the work that we do. So, we offer support programs, bi-monthly, virtual support groups that are free to attend for people that are living with endometriosis or suspected endometriosis. We have Facebook support groups, private Facebook support groups, where we have a membership of, you know, it’s constantly growing, close to over 9000 at this point. People across the country that are actively messaging, communicating with one another, asking questions, wanting to know more, supporting one another. We have awareness campaigns, we have our large awareness campaign, fundraiser campaign, The Endo Network’s Run To End Endo is coming up this year towards the end of May. We also create resources for patients, for people that are impacted by endometriosis. And I think throughout all of that, is that we really honor the individual journey. Because living with endometriosis is quite a challenge. There’s a lot of barriers to care. And being able to come to a place where you feel supported, you’re included, you feel seen, you feel heard, you can empower yourself, you can learn, you have connection, community, these are all really, really important pieces to navigating an endometriosis journey.
Lorie Spence: Well, we know with all of the work you’re doing, funding is really critical, and maybe you could expand a little bit on the federally funded grant that was provided to The Endo Network, and how that sparked this patient led initiative that you’re referencing.
Katie Luciani: We were invited to participate in an application process from Health Canada’s Sexual Health and Reproductive Fund, and we were successful in that application, and we’re a part of historic funding for endometriosis that is outside of research or anything like that. And through that, sort of, we had three kinds of pillars within that project to sort of address delays to care. And so one of those being a public digital awareness campaign to really get the awareness, the education, out there about endometriosis. Another piece to that is a curriculum enrichment program. So for youth, it’s called What You Need to Know. Period. Again, it’s another free resource, bilingual, written in plain language, inclusive, and available both online. There’s also facilitator trainings as well. And then the other piece to that sort of project as well was the Endo Guides, which are resources that were basically, the development was led by people living with endometriosis, and therefore people living with endometriosis to learn more. And also for our family members, our friends, our teachers. Endometriosis is, we say, whether you know it or not, someone you care about has endometriosis. It affects almost 2 million people living in Canada. So, it’s really a societal challenge as well, right, to get that awareness and education out there.
Lorie Spence: Based on these pillars, maybe you could describe some insights from your recent Know Endo campaign that you just wrapped up.
Katie Luciani: So again, this was part of the Health Canada’s Sexual Reproductive Health funding. And so, we launched last March in 2024 and also just wrapped up this year’s as well. We’re really excited to say that it was seen by over 23 million people in Canada. So that’s really, really exciting. Our big focus was getting the public to understand endometriosis, the symptoms of it, but also the impact of it. So, like we were talking about earlier, my path of symptoms showing up at 11 but not getting diagnosed until 27 is not an unheard story. It’s very, very, you know, the average delay to diagnosis, we know, is 5.4 years in Canada, but for some folks, that looks like much longer. And so there’s so many different aspects of life that are impacted, and part of this awareness campaign was to show those sort of like personal moments that you’re missing out on, whether that’s missing out on school, whether that’s missing out on life, whether that’s missing out on celebrations with family, birthday parties, whatever that sort of looks like. It can be such an isolating journey if you’re going through it on your own and also not knowing, like having a name to understand what you’re feeling and these symptoms that you’re going through. So we’re really excited that we were able to get that seen by so many people across the country, and continue to get the sort of word out there about endometriosis and the impact that it has on people living with the disease, for sure.
Lorie Spence: Speaking to that, what assets and resources is Endo Network supporting to empower patients and facilitate shared decision making between patients and providers?
Katie Luciani: Yeah, absolutely. I think that’s a really important piece to the puzzle of living with endometriosis, and it’s being able to have healthcare providers that you can work together with and you can make informed decisions about what you’re going to do about it and how it affects your life personally. So our resources, if you go to our website, I talked earlier about those Endo Guides, you can find them on our website as well. Our website is full of resources that are gender inclusive, that are evidence based, that are written in plain language. And, especially with the Endo Guides that we were able to create more recently within this grant funding, they were led by people living with the disease. The medical writer was somebody living with the disease, as well. And these topics were really topics that were focused on areas of need. So for example, menopause and endometriosis, understanding more about that. You know, mental health and endometriosis, understanding more about that. Surgery and endometriosis, we’re also able to create surgery videos. So I think, from both a patient perspective and a healthcare perspective, it’s a great place to come to, to learn more, even if you’re not living with this disease, you know, to support somebody in your life that does have endometriosis. These resources are there for you to read over, to understand, and to share with others, because I think, at the end of the day, knowledge is power, and so the more that we can get the word out there and the resources out to the people that are in need, the more hope there is for meaningful change for future generations.
Lorie Spence: I know one of the things is fundraising, and The Endo Network is really gearing up for your biggest fundraiser of the year, The Run To End Endo. Could you tell us a little bit more about the event, and why it matters, and how people can get involved?
Katie Luciani: Yeah, absolutely. We’re really excited about it. This year, we’re expanding to eight cities, and we also have a virtual opportunity as well. Because, you know, the reality of living with endometriosis sometimes is that you are not able to go to that event that you really hope to go to. So we’re really excited about it. You can go to our website, endometriosisnetwork.com, and it lists all of the different cities. We’re going to be in Toronto, Ottawa, Charlottetown, St John’s, Newfoundland, Winnipeg, Regina, Vancouver, Halifax. And it’s really, yes, it is an awareness event, a fundraising event, but also it’s an opportunity for people living with endometriosis to come together and to find community, and especially, you know, there’s such a strong digital community, an online community, and so these are opportunities for people that have never necessarily met face to face to come together and meet one another, and to just hold space for what it’s like to live with this disease and what it’s like to continue advocating for change.
Lorie Spence: It sounds like you’ve had a really fantastic year thus far with your campaign and now the run coming up. Maybe, Katie, you can tell us where people can find you and how they can get in touch.
Katie Luciani: So you can find us on social media, Endo Network Canada, and on our website, endometriosisnetwork.com, knowendo.ca and always feel free to reach out to us over social media or through our website, and one of our team members will absolutely reach out and support in any way that we can
Lorie Spence: Well thank you very much for joining us, Katie, and best of luck. I look forward to following your journey.
Katie Luciani: Thank you. Thank you very much for having me.
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