Rare Diseases Are Our Focus, Expertise, and Passion

Our Mission is to improve patient outcomes through awareness and education.

The term “Rare Disease” is defined differently by  different groups:

• For the FDA, a rare condition is defined as a disorder that afflicts less than 200,000 people in the United States. There are approximately 10,000 rare disorders (and counting).
• For patients who have one of these 10,000 disorders, a rare disease is an affliction that does not seem rare, because  they must manage it every day. Patients and caregivers often become experts in their diseases.
• For physicians, rare diseases are often a medical anomaly. They don’t see these disorders often, so they are often overlooked, misunderstood, and seen through the lens of more common illnesses.
• For the pharmaceutical industry,
• For the pharmaceutical industry, rare diseases offer a unique business opportunity: to develop a specific therapy for a small, defined population that can potentially make an enormous positive change in people’s lives while also offering a potential economic benefit.

At CheckRare, we recognize all rare disease definitions. We established our platform to share differing perspectives and raise awareness of rare diseases. We believe that to get the full story on any rare disease, we need to understand the illness from the patients’ and physicians’ perspectives, as well as industry and regulatory viewpoints.

Rare Diseases Are Our Focus

CheckRare is the only publisher and learning platform focused exclusively on rare diseases and rare cancers. We bring physicians and patients the best science, research, and clinical practice information and present it in understandable and clinically useful formats that inform health care delivery and improve patient outcomes.

Rare Diseases Are Our Passion

The People Behind CheckRare

Editorial Focus

CheckRare is a website and learning platform for health care professionals and patients. Our platform allows users to gain insight and learn about rare diseases, current and emerging therapies, clinical trials, and the BioPharma companies behind them. Our peer-to-peer content is a trusted source for education and industry-related content. Our native content and sponsored programs are developed through our website, e-newsletter, social media platforms, and live meetings. We are a trusted, strategic partner with all major organizations in the global network of rare disease advisors and advocates. There is no fee to register on CheckRare and all content is free of charge.

We focus on rare diseases and orphan drugs. In the United States, a rare disease is defined as an illness that affects fewer than 200,000 people. The prevalence of a rare disease usually is an estimate and may change over time. Although rare diseases affect 1 in 10 Americans, over 30 million people in the United States, and 350 million people in the world have a rare disease. According to the U.S. Department of Health and Human Services and the National Institutes of Health, there are about 7,000 rare diseases and about 95% of all rare diseases do not have an FDA approved drug treatment. There are less than 500 treatments approved by the FDA  for the nearly 7000 rare diseases which have been identified.

CheckRare provides clinical updates and practical information that focuses on diagnosing and treating patients with rare diseases and cancers. Our areas of focus include:

• Insight on rare diseases and orphan drugs
• Diagnosing and treating rare diseases
• Current and emerging treatment options
• Clinical trial updates
• Genetic and diagnostic testing

We provide reliable and easy-to-understand information about rare and genetic diseases to:

• Patients and family members
• All health care providers including, physicians, nurses, and genetic counselors
• Researchers and scientists
• Advocacy groups

Our editors, writers, and information specialists seek out content from a number of sources, including interviews with experts, NIH resources, medical conferences, medical centers of excellence, and journal articles.

Editorial Mission and Policy

CheckRare is a digital publisher and learning platform for health care professionals, patients, and caregivers. We evolved through our earlier partnership with a nonprofit organization and spun off as a stand-alone destination of original content. We focus on rare diseases, new and emerging therapies, clinical trials, diagnostics, and the companies behind them. We use our exclusive partnership with American Academy of CME (AACME) for Certified Education, editorial review, and learning program content. Our goals are as follows:

• To develop innovative learning programs about rare diseases that reach physicians and patients.
• To develop original content with the goal of raising awareness about rare diseases and cancers, current and emerging therapies, and clinical trial awareness.
• To partner with all the major organizations in the global network of rare disease advisors and advocates.
• To continue to develop our extensive database of physicians, industry executives, advocates, and researchers with the purpose of raising awareness of rare diseases and orphan drugs, highlighting diagnosing challenges, discussing current and emerging treatment options, and providing clinical trial updates and options for physicians and patients.

CheckRare offers three types of learning content on our platform:

1. Editorial Features are produced by CheckRare writers and editors and by our educational partners such as medical associations, medical centers of excellence, and our global network of rare disease advisors and advocates. Our editors, writers, and information specialists seek out content from a number of sources, including interviews with experts and industry leaders, NIH resources, medical conferences, medical centers of excellence, and journal articles. Editorial Features include news and commentaries, interviews, and Disease MicroCenters.
2. Certified Education is produced through our partnership with American Academy of CME (AACME). The AACME is our exclusive partner and editorial review for learning program content.
3. Industry Features are produced in conjunction with industry interests (including BioPharma and Diagnostic companies). These features are related to disease awareness, clinical trials, new and emerging treatments, and may showcase content that is product focused. The goal with this content is to offer disease insight and clinical data, clinical trial information, and usage of products and devices.

Contact our Publisher, Peter Ciszewski, for more information: Peter.Ciszewski@CheckRare.com

Information Disclaimer

The CheckRare learning platform is designed to help users better understand rare diseases, research, and medical effectiveness. Individuals are urged to consult with qualified health care providers for specific diagnosis and treatment challenges and for answers to personal health care questions. Information on CheckRare is only intended as general summary information and to raise awareness about rare diseases and orphan drugs, current and emerging treatment options, clinical trial updates, and genetic and diagnostic testing. Users are advised to consult appropriate health care professionals for more information on any of these issues.