Making a Difference for "Butterfly Skin"
An overview of how you can support the Epidermolysis Bullosa (EB) community.
What is Epidermolysis Bullosa (EB)?
births are affected by some form of EB.
Epidermolysis Bullosa is a rare genetic connective tissue disorder that results in extremely fragile skin, blistering at the slightest touch or friction. It's often called "Butterfly Skin" because the skin is as fragile as a butterfly's wings.
Living with EB involves a painful, daily wound care routine to manage blisters and prevent infection. Since there is no cure, support focuses on funding research for treatments and providing critical care and supplies to patients and families.
How You Can Help
1. Donate to Make an Impact
Financial contributions are vital. Donations fuel two primary areas: pioneering research to find treatments and a cure, and comprehensive patient support programs that provide necessary medical supplies, wound care, and family services.
Funds are typically allocated to both research and direct patient support.
2. Fundraise for the Cause
You can turn any passion into a fundraiser. "Do-It-Yourself" or supporter-led events are a popular and effective way for communities to raise money. Major organizations provide toolkits to help you start.
Popular fundraising event ideas tracked by support groups.
3. Volunteer Your Time & Skills
Organizations rely on volunteers for a wide range of activities. Whether you're helping at an event or providing administrative support, your time is an invaluable resource that helps reduce overhead costs and expand program reach.
Event Support
Help with registration, setup, and logistics at fundraising galas, 5Ks, and community awareness days.
Administrative & Office Help
Assist with data entry, mailings, and other office tasks, often available remotely or in-person.
Family & Patient Support
Some programs train volunteers to provide emotional support or mentorship to families and individuals new to EB.
4. Advocate & Raise Awareness
Many people have never heard of EB. You can change that. Raising awareness is crucial for building a larger support network, encouraging research funding, and influencing public policy that affects the rare disease community.
Learn the Facts
Understand the basics of EB and the challenges families face.
Share & Educate
Use social media to share stories, facts, and links to support organizations.
Take Action
Contact government representatives to advocate for rare disease research funding and patient-friendly policies.