Welcome to KrabbeConnect
KrabbeConnect is dedicated to improving care and finding a cure for Krabbe disease through collaboration across a network of patients, advocates, doctors, researchers, and organizations. Our goal is to bridge science and patient knowledge to improve care and find a cure. We are committed to a patient-centered approach, ensuring that the voices of patients and caregivers guide research and care.
Our Heroes
We are working towards a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease. Help us celebrate all of the Krabbe disease Heroes and join the fight to #curekrabbe!
Current & Upcoming Events
March 20, 2026
2026 Putt-Putt to #CureKrabbe
Join us for a fun evening of miniature golf while giving back to families impacted by Krabbe disease! Putt-Putt to #CureKrabbe brings together community members, professionals, and advocates for friendly competition, connection, and purpose. Why This Event Matters Funds raised through Putt-Putt to #CureKrabbe directly support individuals and families navigating Krabbe disease by: Your participation […] Read More
ONGOING
Be the Story — Krabbe Disease Newborn Screening Campaign
Are you interested in being the face of our Krabbe disease newborn screening state fact sheets? We’re on a mission to help bring more education and awareness to Krabbe disease newborn screening. All 50 states must be testing for this condition now to prevent a delayed diagnosis, especially in the most severe forms. You can be the story to help change Krabbe disease. See which states across the USA do not have a Krabbe disease fact sheet. If your state is not listed, we invite you to share your story. Read More
Registration is OPEN! 🎉
Join us for a two-part webinar series on IVF with PGD/PGT-M—designed to help families understand their options and hear real-life experiences.
Part 1: (Feb 10th)- provides an overview of IVF with PGD/PGT-M, explaining how the process works, what genetic testing involves, and the important medical and emotional considerations families may face when navigating genetic risk.
👉 Register here for Part 1-https://us02web.zoom.us/meeting/register/79QCftJQRRidTTgEFq4oXQ
Part 2: (Feb 17th) - This panel-style conversation centers on real stories from individuals who have navigated IVF with PGD/PGT-M, creating space for shared learning, meaningful questions, and community connection.
👉 Register here for Part 2- us02web.zoom.us/meeting/register/EJmOeqz9QIiQptyvQyvQxA
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Exciting progress in the Krabbe disease community! Today we’re proud to share that Polaryx Therapeutics will be presenting late-breaking data on their lead investigational therapy, PLX-200, at the 22nd Annual WORLDSymposium as they prepare to launch the Phase 2 SOTERIA trial — including promising work in Krabbe disease.
At WORLDSymposium this week, KrabbeConnect had the opportunity to meet with the Polaryx team, and we’re energized by their commitment to advancing research that could one day impact families living with Krabbe disease. As the SOTERIA trial moves forward, we look forward to assisting Polaryx in navigating the unique challenges of Krabbe and helping ensure the voices of patients and families are part of the journey.
investors.polaryx.com
Polaryx to Present Late-Breaker Data Related to SOTERIA at the 22nd Annual WORLDSymposium™ as Company Prepares for SOTERIA Trial Launch February 3, 2026 Oral presentation provides additional scienti...0 CommentsComment on Facebook
💙 A historic step forward for babies with Krabbe disease 💙
North Dakota officially began newborn screening for Krabbe disease yesterday.
That brings us to 19 states ensuring babies have a chance at early detection—and a chance at life.
Early diagnosis saves lives. It gives families time, options, and hope where there was once only uncertainty.
We will not stop until every baby, everywhere has the same opportunity—no matter their zip code or country of birth.
Thank you to the advocates, clinicians, families, and supporters who continue to walk this journey with us. Together, we move closer to a cure.
#newbornscreening #KrabbeDisease #NBSSavesLives #RareDisease #untileverybaby #curekrabbe
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Amazing news! This is a big win for the rare disease community 💙.‼️Breaking News: Rare Pediatric Disease PRV Program Reauthorized by Congress!
After a two-year campaign to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program, the rare disease community’s relentless advocacy has paid off.
Congress has passed the Labor, HHS, and Related Agencies Appropriations bill, effectively reauthorizing the PRV Program for five years while also funding a number of other critical healthcare agencies.
We applaud the reauthorization of the PRV Program and renewed investments in critical health research and public health programs.
Thank you to the congressional champions who have partnered with our rare disease community to secure these advances. While significant work remains to enable all those living with rare diseases to thrive, today’s progress will accelerate innovation, expand access to life-changing therapies, and offer renewed hope to children and families whose futures once seemed beyond reach.
To learn more about the full healthcare package, please visit our website: everylifefoundation.org/congress-passes-five-year-reauthorization-of-rare-pediatric-disease-prv-p...
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Take a break from the cold and putt for a purpose!
Join us for the Puttshack Miniature Golf Tournament benefiting families impacted by Krabbe disease. Enjoy a fun night out with friends, great food, friendly competition, and putt-tastic prizes for our top mini-golf masters!
💙 Plus, meet the Wolford family, who will share their story and why this mission matters.
📅 March 20, 2026
🕠 Putt Start Time: 5:30PM
📍 Puttshack | Edina, MN
Register here: krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/
Grab a team or sign up solo—every putt helps move research and support forward.
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If you’re attending WORLDSymposium 2026, be sure to connect with Stacy or Michelle to learn more about KrabbeConnect’s mission and work to improve outcomes for individuals and families impacted by Krabbe disease. Collaboration, conversation, and shared urgency move this field forward. Email us at info@krabbeconnect.org to schedule a meeting.
#curekrabbe #worldsymposium #strongertogether
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