Clary Estes's profile photo

Clary Estes

Writer at Bio News

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Articles

  • U.S. leadership in rare disease drugs at risk, BIO expert tells Orphan Drug Congress

    1 week ago | bio.news | Clary Estes

    America has long been the global leader in rare disease drug development but this leadership is at risk unless Congress protects key incentivesIn 1983, President Reagan signed the Orphan Drug Act into law. This landmark legislation, the first of its kind in the world, created vital incentives for rare disease drug development. The success speaks for itself—orphan drug approvals increased from just 38 before the law was signed to more than 880 by the end of 2022.

  • Show Me the Evidence: Data to Understand and Break Down Patient Access Barriers!

    2 weeks ago | bio.news | Clary Estes

    “Data makes you credible; stories make you memorable,” began Amy Niles, Chief Mission Officer of the PAN Foundation, during the Biotechnology Innovation Organization’s (BIO) monthly patient advocacy coffee chat entitled “Show Me the Evidence: Data to Understand and Break Down Patient Access Barriers!” The webinar focused on the role of data in advocating for policy change.

  • World Hemophilia Day: Raising awareness of the need for a cure

    1 month ago | bio.news | Clary Estes

    April 17 is World Hemophilia Day, and in commemoration, Bio.News sat down to talk with the National Bleeding Disorders Foundation (NBDF) about the importance of finding cures for Hemophilia and other inheritable blood and bleeding disorders. The Foundation strives to address the need for cures and prevention of complications from these disorders through research, education, and advocacy, enabling people and families to thrive.

  • Eight themes of vaccine hesitancy that could surprise people

    1 month ago | bio.news | Clary Estes

    According to a new study, vaccine hesitancy is a deeper issue than the prevalence of misinformation online. Rather, it reflects a deep mistrust in institutions and subsequent emotional response to perceived coercion.

  • How cross-sector collaboration drives rare diseases cures

    1 month ago | bio.news | Clary Estes

    April is Sarocoidosis Awareness Month, an opportunity to raise awareness, promote understanding and research, and create hope for the affected patients and their families.

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