Our priorities in educating EB patients and families.
Empowering Families: Understanding Genetics and Inheritance of EB
At DEBRA Malaysia, we are committed to educating patients and their families about the genetics and inheritance of Epidermolysis Bullosa (EB). Understanding the genetic basis of EB is crucial for families to comprehend the risks and make informed decisions regarding family planning.
We provide comprehensive information and resources on how EB is inherited, the probability of passing the condition to future generations, and the implications for family planning. Our educational programs include genetic counseling sessions, informational materials, and workshops led by experts in the field. By empowering families with this knowledge,
We aim to support them in making educated and thoughtful decisions about their future.
Wound management education
At DEBRA Malaysia, we are dedicated to ensuring that parents and caregivers of Epidermolysis Bullosa (EB) patients understand the crucial aspects of EB wound management. It is essential for them to grasp the concepts of disinfection and sterility, as well as the proper dressings to use, to effectively care for EB wounds.
Our goal is to reduce the risk of complications, such as infections, by providing comprehensive education and resources on best practices in wound care. Through workshops, instructional materials, and expert guidance, we aim to equip families with the knowledge and skills necessary to manage EB wounds safely and effectively.
Facilitating knowledge sharing among healthcare professionals
The rarity of Epidermolysis Bullosa (EB) means that many healthcare professionals may not be fully aware of its management. At DEBRA Malaysia, we aim to improve and expand EB knowledge and management through experience-sharing among healthcare professionals, including doctors, dentists, nurses, physiotherapists, psychologists, and genetic counselors.
By fostering a collaborative learning environment, we strive to enhance the expertise and preparedness of healthcare providers in treating and supporting EB patients effectively.