Cure EB - Epidermolysis Bullosa |
The worst disease you've never heard of. be part of the cure for eb...
Epidermolysis Bullosa Explained
Epidermolysis Bullosa, a group of rare genetic disorders, impacts the skin, the body's largest organ. Individuals affected by EB lack essential proteins that normally bind the skin's layers together. The absence of these proteins results in skin tearing, blistering, and shearing, leading to intense pain, disfigurement, and persistent open wounds.
EB manifests as blister formation due to mechanical trauma, with four main types and additional sub-types identified. Severity varies across the spectrum, ranging from mild inconveniences that require activity modification to complete disability and, in some cases, fatality.
Friction induces blister formation, occurring on the skin's surface, within the oral cavity, and, in severe cases, extending to the external surface of the eye, respiratory, gastrointestinal, and genitourinary tracts. Some forms of EB lead to disfiguring scars and musculoskeletal deformities.
Regrettably, there is currently no cure for EB. Supportive care involves daily wound care, bandaging, and pain management as necessary.
1 in 50,000 Children
Epidermolysis Bullosa (EB) is a group of rare genetic conditions that affect one in every 50,000 children. Epidermolysis Bullosa is hereditary, meaning that the genes that cause it may be are present in other family members.
Chronic with NO cure
EB is a chronic disease with no cure. This condition is lifelong and typically manifests from birth or early childhood, persisting throughout a person's life.
Cure EB
At Cure EB Foundation, our mission is clear and unwavering: To provide hope, treatments and ultimately, a cure for Epidermolysis Bullosa (EB).
Developing a cure for a world free from EB
With over 40 clinical trials taking place, a cure is within reach.
Support Research for a Cure
Cure EB directly contribute to funding cutting-edge research aimed at developing new treatments and ultimately finding a cure for EB.
Empowering Families
Cure EB assists in providing vital resources, information, and a sense of community for these families, helping them navigate the complexities of EB.
Raising Awareness
Cure EB's events and initiatives enable increased awareness. Awareness leads to greater understanding, empathy, and support from the public and medical community.
Donate Now
BE a part of it... Donate now to help cure epidermolysis bullosa (EB) the worst disease you've never heard of.
Donate Now
Yes, this is the charity that Pearl Jam frontman Eddie Vedder's charity is embroiled in an international legal stoush over the rights to the use the name of a 12-year-old Melbourne girl to fundraise for the illness. Vedder's New York-based charity EB Research Partnership has sent a series of legal letters demanding the profits from funds raised using Tilly Wilkes' name.
❊ Web Links ❊
➼ Cure EB - Epidermolysis Bullosa
➼ www.cureeb.org.au
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