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That's a wrap. As we travel home from Boston, we take a look at why we do what we do – and hear from patient advocates who inspire us. Keep an eye on Bio.News for continued coverage all summer long, and catch up on the conversation on LinkedIn or your favorite social media platform with #BIO2025. (607 words, 3 minutes, 2 seconds) |
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Patients are ‘central to the purpose of what we do’ |
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The 2025 BIO International Convention shined a spotlight on patients, who shared their stories at the new Storytelling Stage at the Patient Advocacy Pavilion all week long.
“Storytelling is the perfect medium for patients,” and allows researchers to “put a human face on the work that they’re doing, put a human face on any given area of disease where the patient has the most experience and, frankly, the most valuable information to share,” said Michele Oshman, BIO’s Chief Patient Advocate and Head, Patient Advocacy Center of Excellence.
“We have a responsibility to engage patients early and often,”said Leslie J. Williams, MBA, Co-Founder, President, and CEO of HC Bioscience, speaking in a panel, Recognizing the Why Behind Our Medicines. “They’re central to the purpose of what we do. And it can’t be lip service. It has to be very well thought out.”
What’s next: “The flood gates are opening for patients to be engaged at all levels of drug development,” said Rich Brennan, Vice President, Federal Affairs at the ALS Association. Learn more about the power of patient stories: |
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ICYMI: What patient advocates said at BIO 2025
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We got the chance to hear from a number of patient advocates at BIO – here are just a few.
First, meet Joe Dion. Two of his three children were diagnosed with limb girdle muscular dystrophy, a muscle wasting disease that robs your ability to walk in your teenage years. (Actually, you've met him before, and he's a vocal advocate for reauthorizing the Pediatric Priority Review Voucher.)
“I think it’s important to share our story, and let everyone else in the community see what we’ve done to move the needle,” he said—watch: |
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14% of the population lives in rural areas—and they’re often forgotten when it comes to mental healthcare, said Jeff Winton, founder of the Rural Minds Foundation. He shared a heartbreaking story of losing his nephew to suicide.
“At that point we realized there wasn’t enough being done in rural America,” he said. “As the theme of the conference says, we can’t wait, we have to keep moving, we have to keep pushing to find new treatments and new methods to help people that are suffering.”
Watch his story:
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“We want to partner to improve healthcare, improve the research process,” said Kathleen Arntsen, Lupus and Allied Diseases Association (LADA). This includes the chance to weigh in on things like trial design and informed consent, before phase 3. “Put me in, coach – we want to participate,” she said. Watch: |
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