Online Patient Network to Connect Patients With Rare Disease,
Create Valuable Data for Research
CAMBRIDGE, Mass. — January 9, 2013 — PatientsLikeMe and the AKU Society are working together to create the first open, global registry for patients with alkaptonuria (AKU), one of the world’s rarest diseases and the first genetic disease discovered. Nicknamed “black bone disease,” AKU leads to a condition that causes the bones and cartilage to become black and brittle. Through PatientsLikeMe.com, patients with AKU can now track their disease progression, connect with others who have the disease, and contribute health data to the registry’s real-time research platform.
AKU Society Chairman Nick Sireau says rare diseases affect millions of people worldwide, but questions about them are so costly for nonprofits to investigate that they remain largely unanswered. “More than 100 years after its discovery, we still don’t know exactly how many people have AKU, or what they are doing and experiencing. We’re excited to partner with PatientsLikeMe to help patients connect with each other and help researchers answer some of the most fundamental questions about rare diseases.”
PatientsLikeMe works with nonprofits to establish open registries for both rare and common diseases. With the AKU Society, the company will regularly gather data about AKU patients’ symptoms and daily lives to establish the most up-to-date source for new medical evidence about the disease.
PatientsLikeMe Co-Founder and Chairman Jamie Heywood says, “This open registry will give anyone—hospitals, pharmacies, providers, nonprofits and patients themselves—a real world view of where and how the disease affects people. This information is vital to deepen our collective understanding of AKU and to drive smarter action, more effective treatments and better patient outcomes.”
AKU has no cure and is estimated to affect one person in every 250,000-500,000. For more information visit http://www.patientslikeme.com/join/aku.
About The AKU Society
The AKU Society was founded in 2003 in Liverpool by AKU sufferer Bob Gregory and his doctor, Dr. Lakshminarayan Ranganath of the Royal Liverpool and Broadgreen University Hospitals. It was the first AKU charity in the world. It is patient-led and includes patients, relatives, medical experts and friends and carers among its supporters. The society aims to locate AKU sufferers to offer them help and support, to raise awareness of AKU and to support research into its treatment. Its vision is to find a cure for AKU within the next decade. The AKU Society has established an influential multidisciplinary network, including representatives from numerous universities and hospitals, pharmaceutical companies and national AKU patient groups in Europe, the Middle East, Asia and North America. The society has also funded two research programs into AKU and the first AKU information center. Visit us at www.akusociety.org or follow us on Twitter or Facebook.
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.