by Joe Feidt I was having trouble swallowing. That’s how it started. It’s now been 11 years since I heard my neurologist say, “Joe, I’ve got good news and bad…
Continue Reading
Discovering priorities
An IBM patient-led research project Editor’s note: This is part one of a three-part series of articles from Dr. Kevin Austin, an Adjunct Professor in the Health Futures Institute’s Personalised…
Continue Reading
A tribute to Marianne Moyer
Marianne passed away on May 2, 2024, from complications of SRP necrotizing myopathy and interstitial lung disease. On the eve of the one-year anniversary of her death, we offer this…
Continue Reading
The full-time job of living rare
When the NIH and FDA canceled their Rare Disease Day celebration in Bethesda on February 28, TMA, in partnership with Nori’s Fight and Myositis International Health and Research Collaborative Alliance…
Continue Reading
My medical binder
By Dorothy Vetrano In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this,…
Continue Reading