Axenfeld-Rieger Foundation
Legal documents for non-profit website
Create documentation to support and protect the online activities of the Axenfeld-Rieger Foundation
Posted October 16, 2020
Background & Context
The Axenfeld-Rieger Foundation is in the process of launching as a non-profit organization to identify effective treatments for this difficult to manage form of glaucoma which is commonly onset in childhood but can be present from birth. We need legal documentation (T&C's / privacy policy) for the website to help protect our online activities.
Work & Deliverables
The legal documents needed to protect the online activities of the Axenfeld-Rieger Foundation.
Axenfeld-Rieger Foundation
In March 2020, my infant daughter was diagnosed with a rare disease called Axenfeld-Rieger Syndrome, and with glaucoma caused by the syndrome. After the diagnosis, I went in search of information to better understand the condition and how to help her. Other than rare disease websites (very clinical) and scientific papers, there was very little information available. Through my research, I learned that 50-75% of patients with Axenfeld-Rieger Syndrome develop glaucoma between infancy and adolescence. It's estimated that only 18% of patients are receptive to currently available medications or surgical procedures. Many patients lose their vision by the time they are adults. In addition to difficult to manage glaucoma, patients might also have hearing loss, cerebral small vessel disease, dental issues, heart issues, feeding and digestion issues, and more. These challenges are dependent upon the genetic mutation and it's severity. The common theme in this disease is the eye abnormalities and glaucoma. Only a few short decades ago it would have been difficult, if not impossible, to develop a targeted treatment or cure for the symptoms of a rare disease like ARS. Thankfully, this is no longer the case. Progress in the fields of genetic testing and genomic sequencing have made it possible to identify and study rare genetic diseases and their impact on the body. Advances in medical treatments, such as gene therapy, stem cell research, precision medicine, and bioinformatics, have made it possible to develop effective and targeted treatments and cures for diseases previously believed to be incurable. Countries around the world have recognized the impact of rare diseases on individuals and society at large and have established legislation such as the USA Orphan Drug Act of 1983, and the Committee for Orphan Medicinal Products (COMP) in the European Union, to provide incentives for the development of rare disease treatments. Advocate groups for rare diseases now play a crucial role in the pursuit of medical research and product development for rare diseases Through the Axenfeld-Rieger Foundation, we will identify a cure, or effective treatment for the glaucoma and associated eye conditions caused by Axenfeld-Rieger Syndrome, and create resources that help to improve patient lives. This work will include raising awareness of the disease among clinicians, developing guidelines for doctors to use to monitor their patients appropriately, creating resources for patients and their families to refer to, and much more.
Axenfeld-Rieger Foundation
In March 2020, my infant daughter was diagnosed with a rare disease called Axenfeld-Rieger Syndrome, and with glaucoma caused by the syndrome. After the diagnosis, I went in search of information to better understand the condition and how to help her. Other than rare disease websites (very clinical) and scientific papers, there was very little information available. Through my research, I learned that 50-75% of patients with Axenfeld-Rieger Syndrome develop glaucoma between infancy and adolescence. It's estimated that only 18% of patients are receptive to currently available medications or surgical procedures. Many patients lose their vision by the time they are adults. In addition to difficult to manage glaucoma, patients might also have hearing loss, cerebral small vessel disease, dental issues, heart issues, feeding and digestion issues, and more. These challenges are dependent upon the genetic mutation and it's severity. The common theme in this disease is the eye abnormalities and glaucoma. Only a few short decades ago it would have been difficult, if not impossible, to develop a targeted treatment or cure for the symptoms of a rare disease like ARS. Thankfully, this is no longer the case. Progress in the fields of genetic testing and genomic sequencing have made it possible to identify and study rare genetic diseases and their impact on the body. Advances in medical treatments, such as gene therapy, stem cell research, precision medicine, and bioinformatics, have made it possible to develop effective and targeted treatments and cures for diseases previously believed to be incurable. Countries around the world have recognized the impact of rare diseases on individuals and society at large and have established legislation such as the USA Orphan Drug Act of 1983, and the Committee for Orphan Medicinal Products (COMP) in the European Union, to provide incentives for the development of rare disease treatments. Advocate groups for rare diseases now play a crucial role in the pursuit of medical research and product development for rare diseases Through the Axenfeld-Rieger Foundation, we will identify a cure, or effective treatment for the glaucoma and associated eye conditions caused by Axenfeld-Rieger Syndrome, and create resources that help to improve patient lives. This work will include raising awareness of the disease among clinicians, developing guidelines for doctors to use to monitor their patients appropriately, creating resources for patients and their families to refer to, and much more.