Who we are?
We are young foundation (started in April 2014), which core are dedicated volunteers: patients, their parents and medical professionals.
Our mission is to provide help and assistance to patients suffering from devastating skin disease epidermolysis bullosa (EB) and other rare diseases. We promote and support proper medical care of EB patients and hence make their life at least a little easier and happier.
Who we help?
We help Butterfly Children, as EB patients are called due to their extremely fragile skin as only wings of butterfly are. Hence, butterfly is a worldwide symbol of EB and it’s also a symbol of our foundation. Here you can meet some of “our” children, which are however only a small representative group of around 300-500 EB patients in Poland.
What we do?
We organize workshops for patients and their families (eg. focused on proper wound dressing, offer individual support for them, help patients to contact qualified medical professionals (eg. we organize consultations), spread knowledge about the disease both in the society and in professional medical societies. We also cooperate with medical doctors, who help us, but also learn from us, as most of us have personal experience with EB care. This is of particular importance as, in contrast to other European countries, we don’t have multispecialty medical team dedicated to EB in Poland. The most difficult, but worth every effort, part of our activity is connected with an attempts to introduce the national insurance-covered package of medical services for EB patients.
How you can help?
Although we are always there for our patients, we cannot provide them with all (or sometimes even minimum) of what they need. Therefore, we kindly ask you for financial support which will enable us to realize our mission. If you want to donate and help them, please see DONATE US page for details.
Let’s donate our Butterfly Children smile – they will appreciate not toys, but proper care and dressings, which will make their days and nights less painful.