Finding Ways to Support EB Families

As many of you know, in addition to supporting the New Family Advocacy Program for DebRA of America and coordinating the online EB Resource community, I work for Hollister Wound Care. In my role as Coordinator of EB Affairs, I frequently interact with EB patients and their families, healthcare providers and caregivers, developing programs and channels for delivering useful information to each of them, and often find many of the same kinds of questions and needs arise during these conversations.

I’m really pleased to see that Hollister Wound Care truly does what it can to look out for EB families, both through advancements in its TRIACT technology and their commitment to being a vocal advocate and source of support in the EB community. So I am especially excited to share news about a new resource available for the families of newly diagnosed EB patients.

Hollister Wound Care already has several helpful tools that it’s developed to help educate and guide those in the medical community as well as patients, their families and their communities, including a Healthcare Provider EB Resource Kit, EB Resource brochures, a Wound Dressing Application and Selection Guide and a practical cut-out poster demonstrating the various ways to cut dressings for different body parts. I’ve personally gotten the opportunity to help develop a brand new tool, a Patient EB Resource Kit that is now available.

This new patient-oriented kit is designed to give families an “EB starter kit” and will include bandage scissors, a handy tip card, product samples, EB brochures, and more. I’m so excited that Hollister Wound Care has entrusted me to address the concerns and needs that are communicated to me on a regular basis by patients and their families by coordinating the assembly of this patient resource.

This latest addition is yet another example of Hollister Wound Care doing what it can to put good information and resources into the right hands. Similarly, the company has been a key player in educating others about the disease through such innovative campaigns as a sponsored 90-second public service announcement that began airing last summer on Discovery Health and a unique 24-hour Twitter fundraiser that took place during last year’s National EB Awareness Week. And as always, Hollister Wound Care continues to be an active sponsor for DebRA of America and a regular contributor to the conversation at medical and scientific conferences, such as the Clinical Symposium on Advances in Wound and Skin Care.

If you have any questions or interest in any of the current support resources available through Hollister Wound Care or the new Patient EB Resource Kit, please feel free to contact me by phone at 1-888-EBAID4U or by email at Leslie.Rader@hollisterwoundcare.com.

Sources:

Hollister Wound Care, EB Resources

DebRA of America

Related Posts:

The Joy of Helping New Families

Using Restore® and Restore Lite Foam Dressings

Free EB Information Resources

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