The safety and well-being of our Epidermolysis Bullosa (EB) Community is debra of America's top priority. In normal times, the free programs and services we provide are a crucial resource for those with EB and their caretakers. However, given the heightened concerns, quarantine policies and new guidelines mandated by our federal and local government officials in response to the COVID-19 (coronavirus) pandemic, we have been forced to think creatively to best serve our community. Our Wound Care Distribution Program, that sends free bandages and supplies to families, and the portion of our New Family Advocate Program that sends a sampling of products and information were forced to be suspended. Unfortunately, this virus does not change the fact that insurance doesn’t cover the needed medical supplies at adequate levels for many of our constituents. So, as you can imagine, we are still receiving requests for help on a daily basis.
We also made the decision to postpone the debra Care Conference for one year. We couldn’t risk people flying from all over the country to be in close proximity to others to hear from clinicians, academic researchers and the biotechnology community. But, we didn’t want our community to miss out on this valuable opportunity to learn from and interact with, other members of the community and experts in clinical care and drug/therapy development. We are evaluating online communities that we can build to be the portal for our virtual care conference. We will hold live and on-demand webinars so new families can learn care trends and everyone can hear about the therapy development in our disease state. We will add a new Program to the plethora of programs we currently run. Stay tuned for that announcement coming soon.
Even with the suspensions, there is a lot of work to be done. Our EB Nurse Educator Program and Legal Aid Program are continuing to operate and now, more than ever, they serve as valuable resources to the EB Community. Many families are seeking guidance during these times and unfortunately there is a lot of misinformation floating around. We will expand upon these programs with webinars from experts about how COVID-19 may impact those with EB. And, when it is safe to return to the debra of America office, we will need to fulfill all the back orders of wound caresupplies that our families so desperately need.
Despite the disruptions that our organization is facing, debra of America is determined to support our vulnerable population in every way possible. But, now more than ever, we need your help, so we can help those with EB. The charitable donation landscape will certainly change much like other industries hit hard by this virus. We know there are a lot of charities with their hands out right now and it might be difficult for you to give. EB is and always has been "the worst disease you’ve never heard of” and this virus is just adding to the stressors and challenges our community deals with every day. Please consider helping a child and an adult with EB by supporting debra of America.
Thank you and stay safe,
The debra of America Team