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FLARE - May 2023



HAPPENINGS

UTI Health Alliance has made its entrance into the world and is beginning to flourish. We started by creating a patient advocacy resource through our website utihealthalliance.com. Here you will find help for patients who are trying to understand why they keep getting infections over and over again and why the current diagnostic testing is often inaccurate. There are also resources for clinicians who would like to refer to the latest research regarding chronic UTI. In exciting news, we have been invited to join the Bladder Health Alliance as a contributing advocacy organization. The Bladder Health Alliance is a branch of the American Urological Association and operates under the Urology Care Foundation. UTI Health Alliance is honored to be asked to join this initiative and we look forward to contributing to the conversation regarding bladder health from the UTI perspective. Additionally, we have been asked to present a patient perspectives panel to CAIRIBU researchers and clinicians. This talk is entitled “UTI Through the Lifespan - A Patient Perspective.” Five courageous members of the UTI Health Alliance community have stepped forward to share their perspectives. The zoom meeting is open to the public and will be given on Wednesday, June 28, 2023 at 1 pm CDT (2 pm EDT). Our social media marketing campaign kicked off on Instagram, Facebook and Twitter in April. We would appreciate you liking and sharing our pages. This isn’t simply a popularity issue, we are trying to spread the word about choices for UTI testing and treatment. Your simple engagement with our social media pages could have a life-long positive effect on a person.


 

AROUND THE WORLD

We had a lovely meeting with Chronic UTI Australia. They have been doing excellent work in support of chronic UTI since 2018 with a most recent survey released involving 411 UTI patients. We will be sharing results of this survey in the near future. During our conversation, we discussed the need for a world coalition bringing together the globe’s chronic UTI advocacy groups. In this way, we would be able to create a united message about the urgency and gravity of this illness and the crisis we are currently in regarding the state of testing and treatment. We will be working toward this goal over the coming months. The patient advocacy organization, Live UTI Free, has joined forces with Loyola University Chicago to conduct a study that aims to contribute to improving our understanding of recurrent UTI, with the ultimate goal of helping to change the ways in which recurrent UTI is diagnosed and treated. If you or someone you know is interested in participating in the study, it is really quite easy and can be done from home. Both people experiencing recurrent UTI and healthy controls are needed. Please join the study here.


 

JOIN OUR TRIBE

Whether you’ve shared your UTI story on our website, become a subscribing member or simply want to share this newsletter with your friends and family, we welcome you to spread the word about UTI Health Alliance, our initiatives and patient advocacy. Over 15 million people will experience a UTI in the US this year, it’s time for us to start talking about it and demanding better testing and treatment.


 

THOUGHTS FROM THE FOUNDER

It was just six months ago when I began to resolutely entertain the idea of creating something like UTI Health Alliance. When I went to dream up a domain name for our website, I was surprised and a little shocked to find that virtually any name I could think of was available. That experience easily illustrated where we are and the long way we need to go when it comes to the conversation, research and treatment for UTI. I am excited and humbled by the enthusiasm within the patient community, as well as the interest we’ve received from researchers and health advocates. The complexity concerning chronic UTIs and their treatment surprises me daily. There are many layers to this disease to work through and to study. We’ve only just scratched the surface, and I’m excited and hopeful to see where we go. Yours in service, Laura

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