Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care. Together, we have… Continue reading ALS Awareness 2010: A Four Year Journey With Our PALS
Tag: Heywood
Patients like me declare our health data rights
“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what… Continue reading Patients like me declare our health data rights
Sharing Is A Right As Well
We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,… Continue reading Sharing Is A Right As Well
CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday
It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site. Spread the word! Let’s bring a new level of understanding to this disease in a way that nobody else can. Next week: a blog series regarding this new community and the people in it. If you haven’t… Continue reading CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday