Rare Diseases Archives

Get Healthy for Good: An Interview with Catie Coman of the National Psoriasis Foundation

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases / By patientslikeme

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity. What these conditions share is […]

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“A Mile and a Candle” for World MSA Day

Parkinson's Disease, Rare Diseases / By patientslikeme

Today, October 3rd, is World MSA Day. MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical

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How’s Your HDL and LDL?

2 Comments / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases / By patientslikeme

September is National Cholesterol Education Month, which means it’s a good time to find out your total cholesterol levels as well as your HDL (“good” cholesterol) and LDL (“bad” cholesterol) levels. Have you had them checked in the last five years? More than 102 million Americans have a total cholesterol level at or above 200

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See the PatientsLikeMeInMotion Program in Action

1 Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases / By patientslikeme

We’ve shared a lot of great photos on the blog lately of run/walk teams sponsored by PatientsLikeMeInMotion this year. Now you can learn more about this dynamic program in a more dynamic format with our new PatientsLikeInMotion video. Find out how to get involved, what sponsorship entails and how much PatientsLikeMe has donated towards our sponsored

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Do You Know Someone with Dementia?

1 Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases / By patientslikeme

Today, September 21st, is World Alzheimer’s Day. For this annual event, Alzheimer’s associations around the globe are coming together to raise awareness about Alzheimer’s disease, which affects an estimated 36 million people worldwide. This degenerative brain syndrome impacts memory, thinking, behavior and emotion. Eventually, those affected require assistance with all aspects of daily life. The

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Our Pledge to You, the Patient

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By patientslikeme

“We founded PatientsLikeMe on the concept that sharing health data could lead to a more empowered patient and better overall healthcare system. It’s an exciting and giant step forward for us as an industry as we unite around making health data more accessible to those that matter most – the patients.” – Ben Heywood, PatientsLikeMe

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September Is Recovery Month

Every September, the Substance Abuse & Mental Health Services Administration (SAMHSA) observes Recovery Month. The goal is to promote the societal benefits of treatment for substance use and mental disorders, celebrate people in recovery, recognize treatment providers and spread the message that recovery is possible. As the SAMHSA slogan says, “Prevention works, treatment is effective

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What Do You Know About Psoriasis?

3 Comments / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By patientslikeme

Last week, we told you about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival and how you could participate. But for those of you who don’t have psoriasis and don’t know much about it, we wanted to tell you a little more about this chronic condition as August is Psoriasis Awareness Month. An

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PatientsLikeMeOnCall: Living with Type 1 Diabetes

Welcome to the third installment of our new weekly podcast series called “It’s Friday – Let’s Journal Club.” This week’s guest interview is with Sarah Taylor, a type 1 diabetes patient, registered nurse (RN) and friend of the company. Sarah stopped by PatientsLikeMe headquarters last Friday to talk about being diagnosed with type 1 diabetes

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A Little More About Us: A Look Back at the Founding of PatientsLikeMe

1 Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By patientslikeme

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make

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