Clary Estes

1 week ago | bio.news | Clary Estes

May is Arthritis Awareness Month, and in observance, Bio.News asked AiArthritis to discuss how it is advancing the needs of patients with autoimmune and autoinflammatory arthritis diseases across the United States. Globally, there are 450 million people living with one of the over 100 diseases classified as autoimmune and autoinflammatory arthritis.

1 week ago | bio.news | Clary Estes

Starting and running a patient advocacy organization is a massive undertaking. It often includes fundraising, standing up and operating a board and non-profit structure, educating and connecting patient communities, providing assistance to patients and families, engaging in policy and research, and much more.

2 weeks ago | bio.news | Clary Estes

Health and Human Services (HHS) Secretary Robert F. Kennedy Jr.’s “MAHA Report: Make Our Children Healthy Again,” released May 22, identifies the Trump administration’s priorities to address “the childhood chronic disease crisis,” including a call for more government-funded research.

1 month 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.

1 month 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.