Patients with rare diseases are increasingly working to find and fund their own cures. But should they have to?

For the past several months, I've been working on this feature story about how patient advocacy groups are changing the pace of health care, working to find and fund cures for their loved ones' rare ...

Bruce Leuchter, CEO, Neurvati, discusses why patient engagement is essential to understanding rare diseases and driving the ...

Zac Mirecki reflects on six years of survivorship, sharing how his AML journey taught him to priori-tize self-care, seek ...

If you receive a diagnosis that will require a major intervention, such as hospitalization, chemotherapy or surgery, consider ...

She emphasized the importance of self-advocacy: "The most important thing for patients to know is to advocate for themselves, trust what they're experiencing, and maybe do a little research.

About the author: Denis Costello is a patient advocate and Web Communications Senior Manager & Rare Connect Project Leader for EURORDIS (Rare Diseases Europe), a leading European patient-led non ...

Bruce Leuchter, CEO, Neurvati, discusses the vital role of public participation in healthcare policy, highlighting how ...

Caring for an aging parent or loved one can be a complex, confusing business. A patient advocate can help you navigate the maze. If you have a relative in assisted living and you're struggling to ...

Elavay: Patient Insights. Elevated Healthcare Janssen, Pfizer/Seagen, Sanofi, and Gilead Lead New Era of Patient-Centric Engagement MOUNT PLEASANT, SC, UNITED STATES, June 10, 2025 /EINPresswire ...

Under the bill, The Congressional Budget Office said nearly 12 million more Americans would become uninsured by 2034.

--Astellas Patient Centricity is pleased to announce the second annual Patient Advocacy Organization Action Week™ taking place June 9-13, 2025. Many patients and caregivers remain unaware of the ...