In 2005 and 2006, EB advocates in the United States worked tirelessly to ensure the formalization by Congress and the Senate of “National Epidermolysis Bullosa Awareness Week,” to take place the last week of October in perpetuity.
In 2007 and 2008, Canada and Mexico began their own efforts to formalize a National EB Awareness Week. Now, no matter where you live in the world, YOU can take part in this momentous global occasion, our first…
The main objectives of International EB Awareness Week, and the Walk a Mile in My Shoes campaign, are to boost awareness among policy-makers and society at large about EB and its intrinsic impact on the lives of patients and patient families. The week is October 25-31, 2009.
OUR MAIN OBJECTIVES
To create EB awareness and educate the public about this disorder, in every realm from local grassroots involvement to influential international effect… to further the interest of doctors, nurses, educators, and policy-makers, and to support our community of EB families.
To engage society by drawing attention to the necessary work of DEBRA organizations, whose programs benefit people with EB in many countries of the world, and to work in unity to benefit DEBRA and other legitimate EB nonprofits.
To harmonize the efforts of these charitable organizations to raise research funds that will generate a cure and more effective EB treatments.
To be a bit more specific about our objectives, this week’s endeavors aim to:
- Strengthen the widespread voices of EB patients and caregivers to speak in accord;
- Share hope and factual information with EB patients around the world;
- Achieve equity in access to care/treatment in countries where patients experience hardship;
- Use social media tools to inform and enlighten the greater public;
- Stimulate funds to develop a cure for EVERY type of EB, and make them obtainable by EVERY EB patient;
- Foster the shared knowledge of global healthcare professionals through effective networking;
- Engage the interest of stakeholders and donors toward supporting recognized EB charities; and
- Support the coordination and integrity of specific policy actions toward productive, results-driven outcomes.