Hemophilia affects approximately 20,000 people in the United States. Although scientists spend their days studying the inner workings of the disease, what moves them most is hearing from patients and their families about how uncontrolled bleeding in the joints impacted their or their loved one…

  Today, more than 50% of all people living with HIV in the United States are over the age of 50. Ten years from now that percentage is estimated to go up to 70% and more than four in five people will have at least one age-related medical condition. “This is a reality we…

This year has feels like an unfair pile on. One crisis follows another while the first never gets resolved. From the pandemic to global recession to civil unrest to raging fires to hurricanes, the relentless onslaught challenges every sector of our society.  That is why the upcoming BIO…

After 30-plus years working in Washington DC, it’s clear healthcare decision makers recognize that a patient’s story can add value to a discussion when data cannot. While the value of data is not disputed, the art of patient storytelling is seldom discussed.  I believe this is…

Representing all facets of the patient stakeholder community, participants in BIO’s eighth Patient and Health Advocacy Summit (#BIOSummit19) came together to proclaim: “I am BIO.” But as Dr. Julie Gerberding, executive vice president and chief patent officer at Merck and Co., who acted as the event…

For the FDA, engagement with patients, caregivers and patient advocacy organizations is a vital part of the drug development and review process. However, how that engagement happens can determine how successful it is. This was the key question addressed by the “Practices and Principles: Navigating…

When Mark Dant’s son Ryan was first diagnosed with MPS-I, a rare genetic disorder that leads to organ damage, he had to buy a medical dictionary in order to decipher the words the doctors were saying to him. “I didn’t understand the language of the scientists,” Dant recalled. “The key for every…

Alzheimer’s is one of the most feared diseases in the world. Despite many attempts to find an effective therapy to prevent or delay its effects, the disease remains largely untreatable. Many of us know someone with Alzheimer’s. For me, it was my father who was faced with early onset of the disease…

“For years of my life, I’ve let myself be defined by the words of others. Addict, junkie, criminal. With all those labels, it’s so much harder to go get tested for hepatitis C and add one more notch to that.” Those are the powerful words of Cat, a harm reduction advocate from North Carolina—one of…