rare disease

Why these 5 Olympians with health conditions are #1 in our hearts

The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden. U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes […]

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Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

  Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she

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Member Kimberly opens up about living with a rare disease

Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that

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“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day

 February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.1  This year’s theme is all about elevating the patient voice, so we caught up with

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Getting to know our Team of Advisors – Steve

A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being

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Uniting for hope on Rare Disease Day 2014

Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it

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“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell

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