Interstitial Cystitis Association

09/01/2026

September is Interstitial Cystitis (IC) Awareness Month! Throughout the month, we are sharing information each day to help answer common questions about IC/BPS (30 days of Q&A). Please share with your social networks and consider becoming involved in IC Awareness Month activities!

Learn more by visiting https://www.ichelp.org/get-involved/ic-awareness-month/

Many thanks to our IC Awareness Month corporate sponsors, Algonot (algonot.com) and Wellex (wellex.co)!

08/29/2026

✨ Big news from the ICA — our website just got a major upgrade! ✨

We've reimagined ichelp.org from the ground up to better serve the IC/BPS community. Here's what you'll find:

🎨 A fresh, modern look — cleaner design that's easier on the eyes
🧭 Improved navigation — find what you need faster, whether it's treatment info, support resources, or the latest research
📝 Updated, streamlined content — we've condensed and refreshed our information so you get the most current, science-based guidance without the overwhelm

Whether you're newly diagnosed, a long-time warrior, or a healthcare provider, our goal is the same: getting you the information and support you need, faster and easier than ever.

👉 Explore the new site: ichelp.org

Have a look around and let us know what you think! Your feedback helps us keep improving.

💛

08/28/2026

🎦 The recording of our latest ICA Monthly Webinar Series is now live! In this webinar, Dr. Lori Birder introduces 8-AG, a new medication being developed for interstitial cystitis/bladder pain syndrome (IC/BPS). 8-AG works by flipping a natural switch in the body's cells, boosting protective molecules while reducing harmful ones that cause tissue damage. The result is less inflammation, healthier tissue across multiple organs, and meaningful pain relief.

➡Watch now to learn more: https://www.youtube.com/watch?v=FjmAKkuBrhc

🌟 All of our previous webinars are also available on the ICA's YouTube channel! 🌟

This webinar introduces 8-AG, a new medication being developed for ...

08/26/2026

Who is the ICA? Let us reintroduce ourselves. 💛

Since 1984, the Interstitial Cystitis Association has stood alongside those living with IC/BPS, founded by a patient, for patients, and still driven by that same mission today.

We are the only national nonprofit in the United States dedicated solely to the IC/BPS community, and we don't take that responsibility lightly.

Here's what we do:

🗣️ Advocacy — We're the only IC/BPS organization on Capitol Hill fighting for federal research funding. If there's a conversation happening about IC/BPS at the national level, we're in the room.

📚 Education — We provide trusted, up-to-date resources for patients, caregivers, and healthcare providers. And no membership is required; our resources are available to everyone.

🤝 Community — Because no one should navigate this condition alone.

Behind this work is an incredible team: dedicated staff, an experienced board of directors, an interprofessional medical advisory council, and an amazing group of volunteers who show up for this community every day.

For over 40 years, we've been here. And we're not going anywhere.

If our mission resonates with you, consider supporting our work. Every contribution helps us continue advocating, educating, and building community for those who need it most.

👉 ichelp.org/donate

💛

08/25/2026

🌟 Join us tomorrow for our next free webinar in the ICA’s Monthly Webinar Series, 8-AG: A Novel Drug Candidate to Manage Interstitial Cystitis Pain. Hosted by Dr. Lori Birder, this webinar will introduce 8-AG, a new medication being developed for interstitial cystitis/bladder pain syndrome (IC/BPS). 8-AG works by flipping a natural switch in the body's cells, boosting protective molecules while reducing harmful ones that cause tissue damage. The result is less inflammation, healthier tissue across multiple organs, and meaningful pain relief.

🗓Wednesday, August 26, 2026 | 🕘 11:00 a.m. – 12:00 p.m. Eastern | 📍Google Meet

➡Register here: https://8-AG-A-Novel-Drug-Candidate.eventbrite.com

🎟Your confirmation email will include an option to add the event to your calendar and access your tickets, along with a link to join the webinar.

This webinar will be recorded and shared later via the ICA monthly newsletter. (Not signed up to get our emailed newsletters? Visit https://www.ichelp.org/icacommunicationssign-up/)

08/21/2026

From Laura, ICA Executive Director:

Living with IC means some days are harder than others. On those days, comfort can come from the most unexpected (and furry) places. Meet three of my sources of unconditional love and support: Andy, Birdie, and Walter. 🐾

These three have no idea what IC/BPS is, but they somehow always know when I need them close.

We know so many of you in our community have pets who help you through the tough moments too. Tell us about the pet (or pets!) who bring you comfort in the comments. 💛

08/19/2026

🌟 New diagnostic guidelines for IC/BPS from France 🌟

The French Association of Urology just published updated recommendations on how to diagnose interstitial cystitis/bladder pain syndrome, and there's a lot here that matters for patients.

Key takeaways:

🔹 IC/BPS diagnosis should follow a structured, step-by-step process, starting with a thorough history, voiding diary, and validated questionnaires like the O'Leary-Sant score

🔹 Patient phenotyping is essential. The guidelines distinguish between a "bladder-centric" phenotype (often with Hunner's lesions and reduced bladder capacity) and a "sensitization" phenotype (linked to widespread pain conditions), because the right treatment depends on the right phenotype

🔹 Cystoscopy with hydrodistension under general anesthesia is recommended to identify Hunner's lesions and measure anatomical bladder capacity

🔹 Urodynamic testing is reserved for cases with diagnostic uncertainty or voiding dysfunction

These guidelines reinforce what we know: IC/BPS is real, complex, and deserves a careful, individualized diagnostic approach.

We covered this article and more in our latest Research Digest. Sign up for ICA communications so you never miss updates like this, whether it's new research, treatment advances, or advocacy news that affects our community.

👉 https://www.ichelp.org/news-comms/

08/17/2026

🌟 Join us for our next free webinar in the ICA’s Monthly Webinar Series, 8-AG: A Novel Drug Candidate to Manage Interstitial Cystitis Pain. Hosted by Dr. Lori Birder, this webinar will introduce 8-AG, a new medication being developed for interstitial cystitis/bladder pain syndrome (IC/BPS). 8-AG works by flipping a natural switch in the body's cells, boosting protective molecules while reducing harmful ones that cause tissue damage. The result is less inflammation, healthier tissue across multiple organs, and meaningful pain relief.

🗓Wednesday, August 26, 2026 | 🕘 11:00 a.m. – 12:00 p.m. Eastern | 📍Google Meet

➡Register here: https://8-AG-A-Novel-Drug-Candidate.eventbrite.com

🎟Your confirmation email will include an option to add the event to your calendar and access your tickets, along with a link to join the webinar.

This webinar will be recorded and shared later via the ICA monthly newsletter. (Not signed up to get our emailed newsletters? Visit https://www.ichelp.org/icacommunicationssign-up/)

08/15/2026

🌟 Today is Relaxation Day, a reminder that rest is not a luxury, especially when living with IC. Take a moment for yourself today, whether that means deep breathing, gentle stretching, a quiet break, or simply giving yourself permission to slow down.

What are your favorite ways to rest?

08/14/2026

The ICA's very own Board Chair, Amber Carter-Frauenhofer, joined Michael Liner of Liner Legal for an honest and important conversation about living with interstitial cystitis, navigating chronic pain, advocating for proper care, and the challenges many IC patients face when applying for Social Security Disability benefits.

Amber shares her personal journey with IC, her disability approval process, and why self-advocacy and documentation matter so much for patients who feel unheard.

🎧 Listen to the full interview and learn more about IC, disability advocacy, and the work of the ICA: https://www.youtube.com/watch?v=tb1CFn5SbLs&t=67s

If you're not sure if you qualify for benefits it will take you 1 m...