Foundation for Patients with Rare Diseases COCARDA

Foundation for Patients with Rare Diseases COCARDA is rated 3 out of 5 in the category civic & social organization. Read and write reviews about Foundation for Patients with Rare Diseases COCARDA. Foundation for Patients with Rare Diseases "COCARDA"​ is an innovative institution, created by patients and caregivers experienced of rare diseases. The mission of our organization is to provide comprehensive help to patients with rare disease within two main activities: direct help to patients and help through involvement in research on new medicines, clinical trials, early medicines development. Our goal is to improve situation of rare diseases patients in Poland and through international cooperation with other organizations and institutions - to involve in actions aiming improvement of situation of rare diseases patients in Central and Eastern-European countries. Although we are young organization, created 2017, with legal registration recived in March 2018, it's the experience that connected us, founders and members of the Foundation's bodies. The "COCARDA"​ Foundation was created by Anastazja Jachurska, mother of a teenager diagnosed with rare autoimmunologic disease and Rafał Świerzewski, former rare cancer patients. Both of fouders have been involved in patients'​ care for many years, Anastazja individually, looking for help for their own son, and Rafał as a member of several local and international patients organizations. They met few years ago in one of hospitals in Łódź (Poland), where they were taking care of the same young patient. And now, as the result of friendship and common experience of exclusion, marginalization and deprivation of specialistic care - the have created "COCARDA"​ Foundation. "COCARDA"​ (COre CAre Rare DiseAse) - in Polish language (kokarda) means a bow. A bow that connects patients. A bow that connects patients and their caregivers. A bow that connects patients and medical professionals. A bow that connects patients, professionals, pharmaceutical companies, CROs, researchers, scientists, healthcare regulators and all the members of our society. A bow that is our symbol of sustainable efforts in implementation of new ideas, new solutions that are able to improve a quality of life of thousands of patient with rare diseases.