Who Are We?

The Association for the Fight Against Hypophosphatasia Disease (Hifo-DER), founded in Turkey in December 2019, is a non-governmental organization whose mission is to raise awareness of rare bone diseases such as Hypophosphatasia (HPP) and X-Linked Hypophosphatemic Rickets (XLH) and to support individuals living with these diseases. Our association was born from a mother's story of struggle, which began when her son was diagnosed with HPP in 2019 after a series of misdiagnoses and treatment processes.

Hifo-DER works to address the challenges patients face in areas such as treatment, education, employment, and social rights, strengthen family solidarity, and raise public awareness of rare diseases. Furthermore, by sharing international and national scientific research with the public, we aim to facilitate patient access to treatment methods.

Our Mission

To bring together individuals living with hypophosphatasia and other rare bone diseases and provide support. To organize training, seminars, and workshops to raise awareness of the disease. To strive to overcome the legal and administrative barriers patients face during treatment. To create a local database by translating international scientific research into Turkish. To facilitate patient access to medications not covered by the Social Security Institution (SGK). To support the social integration of patients by combating discrimination and prejudice in society.