Become Involved in a Local Support Group

Support Groups are set up in New York,  Los Angeles, Pennsylvania, New Jersey, and other cities. They provide a forum for sharing experiences and support among members, provide access to local medical professionals and provide a way to stay informed of studies, research and progress. Chapters can help raise funds by coordinating fundraising events, and more.

To reach the Southern California Support Group, contact: Gloria_lira@hotmail.com

Distribute EBMRF Materials to Local Medical Professionals

As an orphan disease, one of our greatest challenges is in getting our message out to patients, their families and professionals. We have much to offer to the EB community and we need the help of patients and families in passing information along to healthcare providers, schools and other patients and families. For more information about distributing materials, email us.

Host a Fundraiser

Whether you bake, scrapbook, ride a bike or anything else fun and creative, your support matters. Many friends of EBMRF have turned their hobbies into successful fundraisers. Do you have a hobby that could make a good fundraiser? Let us know!

Share Your Personal Story

Do you have a suggestion for a post or a story to share?  The EBMRF welcomes your input as part of The EB community. We would love to share your personal story with others. For more information, email us.