2 posts tagged “nonprofit partners”

PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients

Posted January 9th, 2013 by

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.

About PatientsLikeMe
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.

All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”

Posted August 9th, 2010 by


PatientsLikeMeinMotion's 2010 Transplant Games photoset
2010 Transplant Games photoset

As you may know from reading Molly’s post last week, a few of us from the PatientsLikeMe staff recently attended the National Kidney Foundation’s 2010 U.S. Transplant Games in Madison, WI. In addition to supporting some of our current nonprofit and industry partners, PatientsLikeMe was an exhibitor at this year’s event. Our goal was to meet as many “Gamers” as possible to hear more about their journeys and to introduce our community where thousands of others are sharing their experiences. (Check out some of the more memorable moments in our photo gallery of the Games on our PatientsLikeMeInMotionTM Flickr page).

If you were a “pin trader” at the Games (a tradition akin to the “trading” that happens at Disney World), you probably walked around with our PatientsLikeMe-branded pin bag hanging from your lanyard or clipped to your belt loop. We gave out thousands of these small blue bags! Or maybe you stopped by the booth to grab a mousepad for a friend, take some leaflets for your clinic or steal a piece of chocolate for an afternoon sugar boost. Regardless of the reason, it was our pleasure to be there and support you in whatever way we could. Below is a video we showed at the booth to help people learn more about our transplants community. (Thanks to our colleagues Aaron and Adam for pulling it together!)

In the middle of day two at the booth, one gentleman stopped by and said to me – “I had my transplant years ago. I don’t really need social support at this point, so, tell me, why would I join a community like this?” And he waited patiently for the answer.

What I love about working for our company is that we don’t pretend to be something we’re not. If PatientsLikeMe is not for you, then it’s not for you. If our site were just a forum or simply a social network, then maybe he’d find little value in joining, and I told him that. But, he listened as I explained why we’re not just a forum. Some recipients still have questions about what they’re experiencing on a daily basis (e.g., “is it normal to still feel fatigue a few years after my transplant?”) and want to find information from patients’ real-world experiences. Other members create profiles to chart their own health over time and share that with their doctors; they may even choose not to interact with other patients. Still, we see many members – just like this gentleman – who had an organ transplant years before and are on our site to share their health journey so that others can learn from it. It’s this generosity in “giving back” that struck us from the first day we opened the doors to our online Transplant Community, and it’s what made the Transplant Games such an overwhelmingly inspirational experience. In the end, it was this generosity that made him say – “Well, good answer. I can jump on that wagon.” All aboard.

Thank you to everyone for doing what you do – online and off – to help raise awareness of organ transplantation and help others learn from your experiences.

PatientsLikeMe member lscanlon