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Hirschsprung's disease occurs in approximately 1 in 5000.

REACH is committed to improving the lives of children and families with Hirschsprung's Disease by increasing awareness, promoting education, connecting individuals and supporting research. Hirschsprung’s disease occurs when nerve cells (also called ganglion cells) are absent from the lower part of the colon. The segment without nerve cells is called the aganglionic segment and it always starts at the bottom of the colon affecting the lower end, it can also extend up the
colon, even into the small intestine. The absence of ganglion cells leaves a portion of the colon essentially paralyzed and unable to propel waste products along its length.

09/28/2026

Join REACH for an important conversation about ostomy care and diaper rash in the Hirschsprung disease community.

We’re excited to welcome Karen, an experienced ostomy and wound care nurse, who will share practical tips, helpful information, and guidance for families navigating ostomy care.

Whether you’re new to ostomy care or looking for helpful tips along the way, this conversation is for you. Grab your coffee and join us virtually!☕️✨

Click the link below to register!
https://www.eventbrite.ca/e/coffee-conversations-diaper-rash-and-ostomy-care-with-karen-baggetta-tickets-1999324470311?aff=oddtdtcreator

09/15/2026

💙 Today is Hirschsprung Disease Awareness Day! 💙

Today, we’re raising awareness for Hirschsprung disease (HD) and celebrating the incredible children, adults, families, healthcare providers, researchers, and advocates who make up the HD community.

Today and every day, we’re proud to stand alongside the HD community. 💙

Let’s spread awareness, support research, amplify patient voices, and work toward a brighter future for everyone affected by Hirschsprung disease.

09/08/2026

🍂 The Fall REACH Newsletter is here! 💙

As we head into fall and celebrate Hirschsprung Disease Awareness Month, our latest newsletter is packed with updates, resources, and ways to get involved in the HD community!

✨ Inside this issue:

💙 5 Ways to Make a Difference This HD Awareness Month

⭐ Reach for the Stars Walkathon

☕ Upcoming Coffee & Conversations webinar on ostomy care and diaper rash

🔬 Our 2026 REACH Research Grant recipient

🌍 Highlights from Hirschsprung Disease Awareness Day at University College London

🎒 Back-to-school tips for kids with Hirschsprung disease

📖 Read the full newsletter through the link in our bio!

09/01/2026

💙 5 Ways to Make a Difference This HD Awareness Month! 💙

There are so many ways to raise awareness, support families, and connect with the HD community!

📖 Share Your Story

📣 Raise Awareness

🤝 Build Community

⭐ Join the Reach for the Stars Walkathon

☕ Listen & Learn

Every action, big or small, makes a difference! 💙

🔗 Check the link in our bio for links to all events, resources, and products mentioned in this post!

08/25/2026

We’re reaching for the stars this September ✨👟

The Reach for the Stars Walkathon is officially back in celebration of Hirschsprung Disease Awareness Month, and we’re launching early so you have plenty of time to gather your people, build your team and plan your September walk.

There’s no set city, route or date. Your team can participate anywhere, at any time throughout September. Walk, run, bike or create an activity that feels meaningful to you and the HD warrior in your life.

Registration is completely free. Once your team is registered, we’ll send you a personalized donation link so you can rally your family, friends, school, workplace and community to support your team and help us raise vital funds for Hirschsprung disease research.

Register your team today at reachhd.org/reach-events and start getting your crew together.

Every team matters. Every donation matters. Every step moves us forward. 🩵🏃🏃‍♀️✨

08/18/2026

🔬 RESEARCH STUDY OPPORTUNITY

Are you a parent/caregiver, person aged 12+ with a colorectal diagnosis, or sibling aged 12+ of someone with a colorectal diagnosis?

Researchers are conducting a study to better understand how colorectal diagnoses, including Hirschsprung’s Disease (HD) can impact:

💙 Family relationships
🧠 Coping mechanisms and the ability to cope with stress
🍎 Relationships with food and body image

https://redcapweb.choc.org/surveys/?s=EAKX3DMDHTH3PFPA&utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAdGRleATxtK5wZG9mAmZkaWQWUMvkdfdUZAlv_7C9takNxTvVz3XytWV4dG4DYWVtAjExAHNydGMGYXBwX2lkDzEyNDAyNDU3NDI4NzQxNAABp4ebYbrwMFkP-wkA-kkaXHwxk08crYMa8kNGXw7QIqASu5VUdrF4EgFbd1nJ_aem_gtSmFtDHsbB-rGN5T-qXYA

05/05/2026

Applications for the 2026 REACH Fellowship are now open! 🩺

This fellowship supports early-career pediatric surgeons and pediatric gastroenterologists who are passionate about making a real difference for children and families affected by Hirschsprung disease.

Click the link in our bio to learn more! ✨

05/04/2026

Since 2013, The REACH research grant has provided a total of $355,000 of funding to not-for-profit organizations engaged in cutting edge Hirschsprung disease research! 🔬🧫

We are thrilled to announce that applications for our 2026 research grant are open! 🧪

Click the link in our bio for more information!

04/27/2026

☀️Find your people. Find your confidence.☀️

Youth Rally is a camp experience for teens (11–17) living with bowel and/or bladder conditions. At youth rally you will have the opportunity to connect, have fun and build confidence in a supportive environment.

Don’t miss your chance to be part of it! Registration deadline is June 1st! Sign up here:

https://youthrally.org/applications 🤍

Address

Boston, MA

Website

http://www.reachhd.org/

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