ReACH Achondroplasia Registry
csen
 
 

Introduction

Achondroplasia is a genetic condition affecting growth and development of the skeleton. People with achondroplasia are typically very short, with their stature reaching on average only about 130 cm. There is no cure for achondroplasia yet, but scientists think there is a cure in sight. Our group collects and curates the information about achondroplasia. Because achondroplasia is a rare condition, it is important that patients, their families and physicians are able to connect and share information. This website intends to do just that, via compiling and presenting what we know about achondroplasia from differing perspectives relating to different areas of basic and clinical research.

Our mission is to improve the quality of medical care for people with achondroplasia through the conduction and support of basic and clinical achondroplasia research. 

The Registry of Achondroplasia (ReACH) collects and manages patient data and thus serves as a tool for clinical researchers as well as health care providers in the Czech Republic. The Registry invites physicians to share their experiences and information concerning patient management. It also facilitates the potential recruitment of patients to achondroplasia clinical trials as well as helps scientists to better understand the clinical mechanisms, incidence, epidemiology and history of achondroplasia in the Central European region. Finally, the Registry allows patients and their families to provide feedback to the health care professionals regarding the quality of the care and how it can be improved. Therefore, please consider registering.