CTX Alliance

CTX Alliance Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from CTX Alliance, Nonprofit Organization, 3500 Midwest Rd, Oak Brook, IL.

Providing education, support, advocacy, and promoting research for CTX patients, their families, and medical professionals who treat and study this rare disease.

Following the success of our first CTX CAFE (CTX Alliance Family & Patient Exchange), we’re excited to invite you to our...
08/10/2026

Following the success of our first CTX CAFE (CTX Alliance Family & Patient Exchange), we’re excited to invite you to our next virtual gathering on Thursday, September 17 at 6:30 p.m. C.T./ 7:30 p.m. ET as part of CTX Awareness Day!

Join CTX patients, families, and caregivers for an informal, welcoming conversation to share experiences, ask questions, offer advice, and connect with others in the CTX community.

Register here:
https://tinyurl.com/SeptemberCTXCAFE

Every baby deserves a healthy start to life, no matter where they are born. 🫶CTX Alliance has joined the Surge to Save N...
07/27/2026

Every baby deserves a healthy start to life, no matter where they are born. 🫶

CTX Alliance has joined the Surge to Save Newborns, a campaign to ensure that every baby in every state receives lifesaving screening at birth for expert-recommended conditions.

Right now, some babies miss narrow treatment windows to prevent lifelong disability or premature death because states face challenges in implementing updated screenings.

Join us and To Save Newborns in calling on Congress to pass a one-time surge of funding to implement screening for all conditions included on the Recommended Universal Screening Panel (RUSP).

💜 Learn more: surgetosave.org
💜 Take action now: https://surgetosavenewborns.quorum.us/campaign/us/


07/02/2026

The 10th Annual CTX Family & Science Summit was our biggest and most successful yet!

Held near Chicago, this record-breaking gathering brought together patients, caregivers, clinicians, researchers, industry partners, and advocates for a powerful day of learning, connection, and community.

From expert presentations to an interactive panel and live audience Q&A, the Summit highlighted the growing momentum within the global CTX community.

This is just a preview—watch for a full Summit recap and photo gallery coming soon to the CTX Alliance website! United Leukodystrophy Found.

06/26/2026

CTX Alliance is ready for today's 10th Annual CTX Family & Science Summit!

We’re excited to hear from all of today’s speakers and look forward to sharing the valuable information and insights gathered with our CTX community.

Last week’s CAFE — CTX Alliance Family and Patient Exchange — was a success for its first run!Our next virtual gathering...
06/25/2026

Last week’s CAFE — CTX Alliance Family and Patient Exchange — was a success for its first run!

Our next virtual gathering will take place on CTX Awareness Day: September 17, 2026. Keep an eye out for CAFE registration information in the coming months.

Featuring our final distinguished speaker, Brian D. Wishart, DO, who will be presenting remotely at this week's CTX Summ...
06/23/2026

Featuring our final distinguished speaker, Brian D. Wishart, DO, who will be presenting remotely at this week's CTX Summit!

The CTX Family & Science Summit is just 3 days away, and there’s still time to register! Join us to hear from leading experts, connect with CTX Alliance leadership, and engage with other CTX families.

Register here:
https://ulf.org/news/conference/

CTX Summit Agenda:
https://ctxalliance.org/ctx-meeting-at-ulf-conference

We’re excited to welcome Robert Steiner, MD, as one of our speakers at this year’s CTX Summit! Dr. Steiner also serves o...
06/19/2026

We’re excited to welcome Robert Steiner, MD, as one of our speakers at this year’s CTX Summit! Dr. Steiner also serves on the CTX Alliance Leadership team.

The CTX Family & Science Summit is just 1 WEEK away, and there’s still time to register! Join us to hear from leading experts, connect with CTX Alliance leadership, and engage with other CTX families.

Register here:
https://ulf.org/news/conference/

CTX Summit Agenda:
https://ctxalliance.org/ctx-meeting-at-ulf-conference

TODAY @ 11 a.m. E.T. It's not too late to sign up! Click to register: https://tinyurl.com/CTXCafeJoin us for the first-e...
06/19/2026

TODAY @ 11 a.m. E.T.
It's not too late to sign up! Click to register:
https://tinyurl.com/CTXCafe

Join us for the first-ever CAFE: CTX Alliance Family & Patient Exchange, an informal virtual gathering for CTX patients, families, and caregivers to connect, ask questions, and support one another.

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3500 Midwest Rd
Oak Brook, IL
60523

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