AHPCS supports the EB community in many ways:
- AHPCS publishes “The EB Advocate” newsletter, which includes articles about people who have EB, as well as product information and insurance tips.
- AHPCS provides the EB Advocate Facebook page and Twitter page.
- AHPCS partners with organizations and foundations that provide resources to people living with EB and their families.
Education is a critical component of EB care. We hope that EB Nurse can be a trusted resource for information. Here, you will learn about products and insurance from AHPCS experts.
The rare nature and profound daily challenges of EB make emotional support just as important. We want EB Nurse to be a place where people can connect with others who understand the physical, mental and emotional demands. A place where people can come to seek answers, find understanding, share wisdom and offer encouragement.
At the same time, we hope that EB Nurse can be a catalyst for something even greater. By working with other advocates, we hope to create awareness, raise money and support research that will lead to more effective treatment and, ultimately, a cure.
In the meantime, we are committed to do all that we can to ensure those affected by EB have the best quality of life possible.