Diagnosed with Common Variable Immune Deficiency at 62


My medical journey began in 2009, when I was 62, but I didn’t have real answers for another two years. After months of severe abdominal issues, my gastroenterologist diagnosed lymphocytic colitis, a chronic disease. After months of rest, diet change and medication, I was finally […]

Neuropathy Association Partners with Research Match


The Neuropathy Association is now collaborating with ResearchMatch to bring together people who are trying to find neuropathy clinical research studies and researchers who are looking for people to participate in their studies. Why? To accelerate neuropathy research! If you’ve ever been told “There is nothing that can […]

College Student Bikes Across America to Honor Late Boyfriend with Sinonasal Undifferentiated Carcinoma (SNUC)

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When Katie Gundlach’s boyfriend Ryan Donaghey died suddenly from a rare form of nasal cancer at the age of 21, she felt like her world had been flipped upside down. After experiencing chronic nosebleeds, Donaghey was diagnosed with sinonasal undifferentiated carcinoma (SNUC) in the summer […]

Gino Odjick Diagnosed with Rare Illness: What’s AL amyloidosis?

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Former Vancouver Canucks enforcer Gino Odjick revealed on Friday that he may only have months, possibly even weeks, to live, after being diagnosed with AL amyloidosis. What is amyloidosis? Amyloidosis occurs when plasma cells that are responsible for forming antibodies against bacteria and foreign proteins […]

Indian Family Hopes for a Cure for Son with Enzyme Assay for MPS


Aarnav was born March 2nd, 2012, as a healthy 2.5 kg baby boy. Chhatrapal and Rajani Sharma, Aarnav’s parents, were thrilled about this new life and their dreams of having a family were finally beginning with the birth of their first child! Several hours after […]

Patient Advocacy Summit: What Will You Learn? Register Now.


What if you could learn EVERYTHING you needed to know about being a patient advocate in just two days? What if you could learn how to be prepared, proactive, and productive in your efforts to better the lives of those with rare disease? What if […]

#PRFail: Honda Falls Asleep at the Wheel Joking About Narcolepsy

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I could write about this in our mediabistro sister blog over at AgencySpy, but why? This is such a #PRFail! This all comes down to a car company and the ineptitude to learn something — say about “narcolepsy.” Allow me: nar-co-lep-sy /ˈnärkəˌlepsē/ (n.)  A serious condition characterized by […]