Trisha Johnson

8 Flips | 1 Magazine | @foREVerveng5uvr | Keep up with Trisha Johnson on Flipboard, a place to see the stories, photos, and updates that matter to you. Flipboard creates a personalized magazine full of everything, from world news to life’s great moments. Download Flipboard for free and search for “Trisha Johnson”

Support & Donate To EB Families

Shamila Jayne “Baby Zhamie” Alolon is a pretty and happy little that you can’t help but be enamored by her sweet smile. With her cheery attitude and …


Why Rare Disease Caregivers Inspire Me

Posted by Pamela Todd | 2:29pm on Friday, November 15, 2013<p>Caregivers must act as researchers, care coordinators, and advocates<p>If you want to know …


Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-Pigmentosum | The Addi and Cassi Fund - Niemann Pick Type C

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings throughout September to raise awareness for <i>all</i> rare diseases, …

Skin Care

Wayne Lemos

What is the I Refuse campaign for Epidermolysis Bullosa Awareness

Epidermolysis Bullosa, EB, is a rare connective tissue disorder that affects 1 in 50,000 live births. There are children and adults who face the …


Epidermolysis Bullosa Explained

I hope that this site will give people an understanding of what a child living with this unfair and horrific disorder goes through every day of her …