DEBRA Malaysia is a non-profit, non-governmental voluntary organization dedicated to improving the quality of life for individuals living with Epidermolysis Bullosa (EB) and their families across Malaysia. Founded in 2013 and registered with the Malaysian Registry of Societies in 2014, DEBRA Malaysia is a fully committed support network offering advocacy, education, and practical assistance to those affected by EB.

We are proudly affiliated with DEBRA International, a global network of patient support groups that connects organisations and advocates for EB patients worldwide. Additionally, we are members of the International Alliance of Dermatology Patient Organizations (GlobalSkin) and the World Patients Alliance (WPA).

In Malaysia, most of the individuals living with EB are children, who face not only physical challenges but also significant emotional and social hurdles. The fragility of their skin leaves them vulnerable to frequent and severe wounds, often resulting in scarring, infections, and the need for continuous medical attention. The impact of EB is profound, affecting not just the patients but also their families, who often experience isolation due to the rare and complex nature of the disease.

At DEBRA Malaysia, we work directly with key stakeholders, including healthcare professionals, government bodies, and community organizations, to advocate for better access to medical treatment, wound care supplies, and psychological support for EB patients. We also aim to raise public awareness and educate society on the challenges faced by people with EB to promote empathy, understanding, and inclusivity.

Our Vision:
To ensure every individual living with Epidermolysis Bullosa (EB) receives unwavering support and has access to specialized care, comprehensive healthcare, and essential social services to improve their quality of life.

Our Mission:
To empower individuals affected by EB, along with their families, healthcare professionals, researchers, and industry partners, by providing the knowledge, tools, and resources necessary to improve their lives, promote early diagnosis, and ensure access to the right care across the country.

Through our work, we have impacted the lives of many families who struggle daily with the challenges posed by EB. However, there is still much to be done. Our goal is to continue raising awareness, advocating for better policies, and ensuring that no one affected by EB is left behind in Malaysia.