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11 Results Found

patient advocacy
"Nothing to Lose": Patients Fight to Be Heard
In this episode of I am BIO, we have two powerful stories. Each one is as different as the disease that it’s about. Yet there is a common thread: patients want and need to be heard. You will hear from a mom who will do whatever it takes to save her son’s life.  And you will learn about a young…

Patient-Doctor
Your Issues Are Our Issues
Image During this past year we’ve heard from patient groups about how the COVID-19 pandemic has upended the healthcare landscape for patients in the U.S.  We’ve learned about the struggles patients have had in accessing their medicines, securing doctors…

Sangamo
Connecting scientists to patients makes breakthroughs possible
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…

HIV Test
Coordinating Care for People Living and Aging with HIV
  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…

Patient & Health Advocacy Summit Digital
A Unique Conference for a Unique Year
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…

Patient & Health Advocacy Summit
Patient Storytelling: There’s an Art to it!
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…

Patient & Health Advocacy Summit
#BIOSummit19 Concludes with Message of Hope Offered by Innovation
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…

Patient & Health Advocacy Summit
FDA Discusses Effective Patient Engagement at #BIOSummit19
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…

Patient & Health Advocacy Summit
#BIOSummit19: Education and Partnerships Raise Awareness
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…

Patient & Health Advocacy Summit
Making Alzheimer’s Treatments a Priority
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…

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