Today is an exciting day for PatientsLikeMe. In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research. The news release announcing the partnership is below. ****** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – […]
As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community. We asked this newly launched community to tell us “How are you overcoming fibromyalgia?” This is what they had to say: Thanks to all of you who contributed your “voice” to this video.
Voices of Fibromyalgia: Patient Video Read More »
Meet Alyshia Alyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose.
From Lupus Diagnosis to Fearless Patient Advocate Read More »
“Living with lupus [a systemic autoimmune disease] is difficult. I thrive by staying positive,” says 2019 Team of Advisors member, Juana (@Juanymata). Advocating on behalf of lupus patients like herself is one key way Juana stays positive. Off and Running Only months after being diagnosed with rheumatoid arthritis and systemic lupus erythematosus, Juana Mata and her two sisters formed a team to
Lupus Advocate and PatientsLikeMe Team of Advisors Member, Juana Mata Read More »
Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in
“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it. Advocating for “Onlyness” Nilofer has been championing the idea of “Onlyness”
Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS. Tablets: Windows vs. iPad vs. Android Trouble with typing
Communicating with ALS: From devices to voice banking Read More »
Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team
Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences Read More »
CAMBRIDGE, Mass., December 14, 2017—PatientsLikeMe has named 13 members to its 2018 Team of Advisors, a patients-only group that collaborates with the company on new research and product development, advocates on behalf of patients, and provides real-world perspectives to industry and PatientsLikeMe partners. “This is now our fourth Team of Advisors, and its members
PatientsLikeMe names 2018 Team of Advisors Read More »
More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community. From in-person meet-ups to live-streaming support groups and off topic threads, patients
Creating communities, on and off PatientsLikeMe Read More »
