Coming Together for a Cure

Coming Together For A Cure started because families living with Duchenne needed a place to find each other and be with people who understood.

The Rare Compass Forum is that idea, expanded. One day, five conversations, built with input from parents, clinicians, and advocates who've been in the room when the questions get hard.

If you're new here: welcome. If you've been with us for a while, thank you for helping us reach this milestone.

Registration is free and open through July 20 — link in bio or visit ctfac.org/rare-compass-forum.

Mark your calendar 📆

On July 20, we're bringing the Duchenne muscular dystrophy community together for the first Rare Compass Forum — a free virtual summit built for families, caregivers, and everyone navigating this diagnosis.

Five sessions. Real conversations about research, treatment access, caregiver wellness, advocacy, and what it actually looks like to live with DMD. No cost to attend, just bring your questions.

Registration is open now — link in bio or visit ctfac.org.

🧭 Introducing Rare Compass Forum

Navigating a rare disease diagnosis can feel like being handed a map with no legend. You're making life-altering decisions with incomplete information, in systems that weren't designed with you in mind.

Rare Compass Forum exists to change that.

As CTFAC's flagship virtual summit, we've designed a dedicated space for rare disease patients, caregivers, and advocates to connect with experts, share lived experience, and access resources that actually move the needle.

Here's what's coming:
✦ Expert-led sessions with speakers who specialize in rare disease navigation
✦ Real conversations about treatment access, funding, and advocacy
✦ A community built around people who get it

This page is just getting started so follow along. Share this with someone who needs it. And if you've ever felt lost in the rare disease space, this was built for you.

🔗 Link in our "About" section to learn more about CTFAC, Rare Compass Forum, and what's ahead.

We are beyond grateful! 🙏 A massive thank you to the K-State NSSI National Strategic Selling Institute and everyone who participated in the 14th Annual NSSI Benefit Auction. Your generosity raised $25,827.72 for Coming Together For A Cure, proof that when people come together, incredible things happen. 💜

CTFAC took some advice from the infamous Patti LaBelle and got a new attitude in the form of an updated and refreshed website!

We’re excited to showcase the new look and feel of CTFAC and continue to help those impacted by rare disease find resources and support. We hope that our community will take time to explore our new website, be curious about our programs, and continue to stay engaged as we help others along in their rare disease journey.

Find us at www.ctfac.org