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… Continue reading PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients
What Would You Tell Yourself 10 Years Ago?
The beginning of a new year is always a time for reflection. You look back, you look ahead and you try to find the big picture. For patients living with chronic health conditions, a new year can be an opportunity to implement and share lessons learned along the way – about how to cope, manage… Continue reading What Would You Tell Yourself 10 Years Ago?
A Patient Poem for the Modern Age
Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 000+ patients strong – think so. In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone. As evidence, here… Continue reading A Patient Poem for the Modern Age
Use It or Lose It?
You’ve all heard the phrase “use it or lose it” before. But should it be applied to patients with chronic, debilitating illnesses? That’s an ongoing debate in the PatientsLikeMe forums. Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum. On the one hand, there’s the argument that brain exercises such as… Continue reading Use It or Lose It?
My War with Psoriasis: An Interview with British Blogger Simon
Welcome to the latest installment of our “Spotlighted Blogger” series. Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix. PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that… Continue reading My War with Psoriasis: An Interview with British Blogger Simon
Not Recognizing the “New Me”
For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself. According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family,… Continue reading Not Recognizing the “New Me”
PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice
TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice.… Continue reading PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice
PatientsLikeMe Inducted into the Healthcare Internet Hall of Fame
Perhaps you’ve heard of the Basketball Hall of Fame. Or the Rock and Roll Hall of Fame. But did you know there’s a Healthcare Internet Hall of Fame? Formed in 2011, the Healthcare Internet Hall of Fame was established “to honor individuals and organizations that have made outstanding, long-lasting contributions to the healthcare Internet industry”… Continue reading PatientsLikeMe Inducted into the Healthcare Internet Hall of Fame
Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe
Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades. After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms. Discover what hindered the process and what’s she learned along the way… Continue reading Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe
The Five Different Types of Psoriasis
On Monday, we recognized World Psoriasis Day on our blog, and today we’d like to dig a little deeper into this lifelong autoimmune condition, which can cause skin lesions on almost any area of the body as well as psoriatic arthritis. Did you know that there are several types of psoriasis, and that they can… Continue reading The Five Different Types of Psoriasis