Awareness & Advocacy Events provide opportunities to ensure that the voices of all people with EB are heard.

Thousands of advocates join together in a global effort to spread awareness on social media, raise funds to support our mission, and celebrate the inspiring individuals and families that make our EB Community.

Upcoming Events

Rare Disease Day

Rare Disease Day

February 28, 2023

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare disease and their impact on patients’ lives.

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EB Week

EB Awareness Week

October 25-31, 2023

National Epidermolysis Bullosa Awareness Week is a time to increase awareness of EB, promote the need for a cure, and to spur advocacy on behalf of the thousands of individuals and families living with EB in the United States.

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Giving Tuesday


November 28, 2023

#GivingTuesday is a global day of giving, fueled by the power of social media, that aims to inspire people across the globe to give back to causes and issues that matter to them. 

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