Mission Statement
Promote the well-being and inclusion of people with EB ensuring they grow healthy throughout their later lives.
Ensure that anyone suffering and living with EB receives the necessary support system to access Health, clinical services, and social care.
Vision
All patients with epidermolysis bullosa enjoy a healthy body and skin, and a better lifestyle, and are privileged with the best possible health care.
Core Values
Impact
We strive for significant and lasting impact
The “Butterflies” are the centerpiece of everything we do! Butterfly Wings Organisation aims to make a positive difference in the lives of those affected with Epidermolysis Bullosa.
We respond to the needs of every child, and young people with EB to promote lasting change.
Inclusion
We are inclusive
We are dedicated to providing personalised and comprehensive palliative care services that honor each patient's unique needs and preferences. Our multidisciplinary team embraces diversity and collaborates seamlessly to ensure every patient receives equitable access to compassionate, high-quality care.
Quality
We are committed to quality
We strive to prioritise patient-centeredness, safety, compassion, and continuous improvement on a case-by-case basis and according to the facts of the particular condition achieving a better quality of life.
Loyalty
We are loyal
we are Loyal to Our Mission and Community! We are steadfast in our loyalty to our mission, vision, and the community we serve, demonstrating unwavering dedication, commitment, and support.
Confidentiality
We Respect for Confidentiality and Privacy
We uphold the highest standards of confidentiality and privacy, safeguarding the trust and dignity of every individual entrusted to our care.
We obtain informed consent from patients and their authorized representatives before disclosing any confidential information, ensuring transparency and respect for individual autonomy.