Raising Awareness about Epidermolysis Bullosa (EB)

Welcome to the home of the INTERNATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK campaign, which takes place the last week of October (10/25-31) each year!

EB DAY is recognized on October 25th.

Raising Awareness about Epidermolysis Bullosa (EB)This campaign is endorsed by DEBRA International and DEBRA national chapters worldwide, by EB Medical Research Foundation, and by EURORDIS, CORD, NORD, and other nonprofit partners who help people with EB, rare diseases and skin diseases. To date, this international campaign has reached individuals and organizations in 125+ countries around the world!

This year, let’s keep pushing for 150 countries! That IS achievable if we all do our part to tell the world about International EB Awareness Week; give them the facts about what EB is; tell the world why we care; stress that there is NO cure as yet; illustrate that we are working hard on research for a cure and effective treatments; and USE this week to connect with new volunteers, educate more people and raise funds for our objectives, to do OUR BEST for people with EB around the world. To find a DEBRA organization around the world, or contact DEBRA International’s “EB Without Borders” committee whose members assist people with EB wherever there is no DEBRA charity to help, go to www.debra-international.org.

There are SIX important elements to the International EB Awareness Week campaign:

Proclamations

by government representatives pronouncing IEBAW, see this page for examples and seek proclamations where YOU are. Proclamations are important – it really helps create awareness when your government representatives say publicly that they SUPPORT people with EB, and often this will reach the media eye and bring attention to your needs.

Press Releases

See our page to download an older one as an example – customize it if you are an EB organization, and seek toSpromote IEBAW through media opportunities.

Public Service Announcement

Back in 2011, we ran a global PSA featuring popular actress Courteney Cox. This year, some new EB awareness is being created by Eddie Vedder or Pearl Jam and Colin Farrell. Many TV stations will air PSA’s for free for charitable organizations. Try to use trusted local celebrities to help you get the word out, if you can. No matter what, use YOUR story as the foundation and contact the media, tell them why awareness is important, tell them what you need, ask them to help you get your EB story out there in the public eye – it CAN be done.

Posters

to create awareness. Unfortunately, time constraints prevented updating the poster this year but you can use the poster (to be updated for current year by June) below, in low resolution for emailing and high resolution for printing. If you don’t see your country represented in the photos, email Gena and ask for your country to be added in order to promote EB awareness where you are!

Projects

for those of you who are holding awareness and fundraising events, please click around the site to see the various resources available, no matter what your project might be to raise money for EB research!

Social Media

use the Facebook cover picture below to promote IEBAW! Also, be sure to TWEET about this important week, put the global poster on your website or blog, etc. Social media is an incredibly powerful tool that we must use to recognize this important week. And feel free to add me on Facebook:
https://www.facebook.com/gena.brumitt

IEBAW’s principal fundraising project, Walk a Mile in My Shoes, can be used by ANY EB awareness/fundraising event in ANY country! We welcome Community Partners from around the world: all who wish to see the objectives of this week fulfilled! World Health Organization concurrence is strongly requested this year by participants in the international EB community, working together as ONE.

Please join us as an advocate for people with EB – and help us be the change that we want to see in the world! Just to give you an IDEA of what people can accomplish when they work together toward a clear goal, have a look at the National EB Dressing Scheme that is now in place thanks to the herculean efforts of DEBRA Australia, announced in honor of our first International EB Awareness Week! ~