Unique patient challenges and support solutions in rare disease

Living with any chronic health condition can be demanding, but rare diseases bring a unique set of challenges for patients. These can range from diagnosis difficulties to limited information and support, a lack of knowledge – even within medical services – and social stigma. Such challenges negatively impact patients and carers – preventing the best possible health outcomes from being achieved. To better understand the unmet support needs of such patients along with the solutions to address these, we asked people who have been diagnosed with a rare disease to share their stories, interviewed a pharmaceutical executive and health psychology researcher and reviewed the most recent and relevant adherence and self-management research in rare disease.

Spotlight

OSF Saint Anthony's Health Center

ponsored by the Sisters of the Third Order of St. Francis, OSF Saint Anthony's Health Center is a two-campus, 203-bed acute care facility located in Alton, Illinois. Comprised of the OSF Saint Anthony's Health Center campus and OSF Saint Clare's Hospital, the organization offers the latest in technology and state-of-the-art medicine administered with compassion and skill...

OTHER WHITEPAPERS
news image

The Impact of Ransomware on Healthcare During COVID-19 and Beyond

whitePaper | November 17, 2021

The pandemic hit the healthcare industry hard, but it also weakened the cybersecurity defenses of most providers, making them far more vulnerable to threats such as ransomware. This report, covered across national news, is considered the most significant actionable cybersecurity research over the past several years because it also documents the severe impact on patient care. This executive summary includes critical areas that providers can address starting today.

Read More
news image

Optimizing the Revenue Cycle: 5 Strategies for Healthcare Organizations

whitePaper | February 19, 2020

Technology investment is just part of revenue cycle management, and engaging patients in the financial side of their treatment will be a key theme at HIMSS20. It contains patient engagement in their medical bills, pricing transparency when choosing treatments and medications ,organizational integration of revenue cycle management, automation of prior authorization

Read More
news image

Medical Implants Product Guide

whitePaper | April 7, 2022

For more than 30 years, the NuSil™ brand has been continuously supplying medical device manufacturers with silicones of the highest purity and long-term stability for medical implant applications.

Read More
news image

Reimaging Data Governance for a Healthcare Ecosystem

whitePaper | September 19, 2022

Across all industries, and particularly in healthcare, companies are looking to tap into their data assets and drive intelligent decision making across the organization.

Read More
news image

Three ways to improve the front-end of patient access that will drive top-line revenue

whitePaper | November 7, 2022

For revenue cycle management (RCM) leaders, strict requirements, tight timelines, and complex regulations are par for the course.

Read More
news image

Improving and Strengthening Employer-Sponsored Insurance

whitePaper | October 22, 2022

Under the leadership of former Senate Majority Leaders Tom Daschle and Bill Frist, M.D., BPC’s Health Program develops bipartisan policy recommendations that will improve health care quality, lower costs, and enhance coverage.

Read More

Spotlight

OSF Saint Anthony's Health Center

ponsored by the Sisters of the Third Order of St. Francis, OSF Saint Anthony's Health Center is a two-campus, 203-bed acute care facility located in Alton, Illinois. Comprised of the OSF Saint Anthony's Health Center campus and OSF Saint Clare's Hospital, the organization offers the latest in technology and state-of-the-art medicine administered with compassion and skill...

Events