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debra of America

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debra of America

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is the only U.S.
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debra of America is the leading national nonprofit improving the lives of those impacted by Epidermolysis Bullosa (EB) —"The Worst Disease You've Never Heard Of." nonprofit providing all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™ Visit: debra.org

06/08/2026

🚨 1 WEEK left to register for the 2026 debra Care Conference! 🚨

Join the world’s largest gathering of the Epidermolysis Bullosa (EB) Community in Los Angeles, July 26-29 (with hotel stays through July 30)!

Expect four days of expert talks, practical guidance, community connection, and meaningful time with others who understand the EB journey.

⏰ Registration closes June 15. ✨JOIN US at https://bit.ly/4vGhXpH

06/05/2026

🚨 FUN ALERT! 🚨

This July, kids and teens living with EB—and their siblings—will enjoy a jam-packed week of fun, friendship, and adventure in the Kids Zone and Teen Lounge at the 2026 debra Care Conference (DCC).

Get ready for:

🎩 Magician Show
🏴‍☠️ Pirate Party
🫧 Bubble Show
🐾 Animal Encounter
✨ Creative Crafts & Projects
🏕️ Friendship & Fun with Camp Wonder
👣 Special Activities for Siblings with Sandy Feet
🤝 Teen Team Building & Social Events ... and more!

Join us July 26–29 at the Los Angeles Airport Marriott in Los Angeles, CA (hotel stays through July 30). Registration closes June 15, so be sure to secure your spot and register today at https://pulse.ly/qnehf5cwwk

06/04/2026

“Golfing with my sister is one of my very favorite things to do in the world.” — Carly

We are excited to share Carly and Kathryn’s story as the countdown continues to Par for a Purpose: The debra Golf Classic on October 4, 2026 ay Grayhawk Golf Club in Scottsdale, AZ — where they will be joining us on the course! ⛳✨

Sisters, athletes, and lifelong golfers, they offer a powerful window into life with RDEB, showing how resilience, adaptation, and a shared love of golf shape their lives both on and off the course.

Read their full story on our blog and get to know them ahead of a special day on the fairway: https://pulse.ly/asefg20ys2

06/02/2026

⏰ LESS THAN 2 WEEKS LEFT TO REGISTER FOR THE DCC!

The 2026 debra Care Conference (DCC) is coming to Los Angeles, July 26-29 — and registration closes June 15th. Don't miss it!

Join us for the Epidermolysis Bullosa (EB) event of the year — bringing together hundreds of individuals and families touched by EB, alongside doctors, researchers, therapy developers, and advocates. 🤝🦋

🗓️ July 26–29 (hotel stays until the 30th)
📍 Los Angeles Airport Marriott (Los Angeles, CA)
🔗 Register now at https://pulse.ly/2kz4neunwn

06/01/2026

As we head into summer, rising temperatures can bring added challenges for those living with Epidermolysis Bullosa (EB). ☀️

To help make the season more manageable, debra of Ameriac’s EB Nurse, Catherine, shares practical tips for staying cool, hydrated, and comfortable during the hotter months.

Read the blog post: https://pulse.ly/9zkyxlhtwf

05/30/2026

Hearing the diagnosis “Epidermolysis Bullosa” for the first time can leave families feeling overwhelmed and unsure of what comes next.

That’s why debra of America’s New Family Advocate Program exists. From emotional support to practical guidance, this program connects newly diagnosed families with a full support system . Families also receive a free care package filled with wound care supplies, educational resources, and comfort items.

And the impact is real: when we surveyed past participants, 100% said that the program reduced their stress. ❤️

Learn more and get help at https://pulse.ly/j9jbtc4pbu

05/29/2026

🎤✨ Back by popular demand: Community Karaoke Night is returning to the debra Care Conference (DCC)!

From heartfelt ballads to unforgettable group performances, Karaoke Night has become one of the most joy-filled traditions of the DCC experience. It’s an evening that captures the incredible spirit of the EB Community — and yes, our community is seriously talented.

Community Karaoke Night is one of THREE social events taking place during this year’s DCC, happening July 26–29 at the LAX Marriott in Los Angeles. Alongside educational sessions and important conversations around EB care, research, and advocacy, these moments of joy and togetherness are what make the DCC so special.

Registration closes June 15!

🗓️ July 26–29 (hotel stays until the 30th)
📍 Los Angeles Airport Marriott (Los Angeles, CA)
🔗 Register now at https://pulse.ly/reydnihqtq

05/28/2026

“Even through all of this, Matthew is such a happy baby. We are over the moon and would not want him any other way.” 💛

Born with an open wound covering his entire left foot, Matthew was diagnosed with Epidermolysis Bullosa (EB) within an hour of birth. Unaware of any family history of EB, his parents were quickly learning how to care for their newborn in a very unexpected way.

Read the family's story, told in the words of Matthew’s mom Jessica, at https://pulse.ly/i1xkhx1pkx

05/27/2026

Living with Epidermolysis Bullosa (EB) as an adult means managing more than day-to-day care. It's long-term decisions, changing needs over time, and the realities of navigating health, relationships, and life in general.

The 2026 debra Care Conference (DCC) brings these experiences into focus with sessions designed for adults living with EB at every stage. Topics include chronic wound management, pain and GI care, emotional wellbeing, anemia, SCC, surgery, and more.

Highlights include an Adults with EB panel discussion and Q&A on EB management and gaps in care, conversations on relationships and intimacy, and workshops tailored for young adults and adults 35+, along with open forums on physical activity and shared lived experience.

We hope to see you in Los Angeles this July.

🗓️ July 26–29 (hotel stays until the 30th)
📍 Los Angeles Airport Marriott (Los Angeles, CA)
🔗 Register now at https://pulse.ly/rfd8bgkyzq

Registration closes June 15.

05/26/2026

Join at the Medtronic Twin Cities Marathon in Minneapolis–St. Paul on Sunday, October 4! 🏃‍♀️🏃‍♂️

Every mile run with TEAM DEBRA helps raise awareness and vital support for individuals and families living with Epidermolysis Bullosa (EB), a rare and painful disorder.

We’re inspired by runners like Byron Johnson (pictured), who joined our team in 2025 and shared:

“I love running. There is something about getting outside, moving, and breathing that brings me back to a place of gratitude for the life God has given to me... I love the Twin Cities Marathon because it brings so many people together, in unity. I’m excited to run for TEAM DEBRA. I hope my participation is an encouragement to those fighting EB.”

If you’ve been looking for a reason to run your next race, this is it! TEAM DEBRA has spots available for both the Marathon and the 10-Mile Race.

👉 Email Jason at [email protected] or sign up at https://pulse.ly/ykusmjhpag

Address

1023 Walnut Street, Suite 100
Boulder, CO
80302

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+12128681573

Website

http://debra.org/

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