Frontline Medical Communications, in collaboration with Global Genes, conducted a study among healthcare professionals from 15 different therapeutic specialties to understand the challenges of diagnosing and treating patients with rare diseases. The results confirm the overwhelming need of healthcare providers for greater awareness, collaboration, networking, training and education, with multiple professional resources focused on the diagnosis of rare diseases, available treatment options and management strategies of these disorders.

Frontline Medical Communications—publishers of more than 30 medical publications and newspapers and a leading provider of print, digital, and live events for clinicians— recognized and embarked on this extremely important subject to uncover the unmet professional needs of its readers. In collaboration with Global Genes, a leading patient advocacy organization representing the rare and genetic disease community, Frontline surveyed U.S. physicians in 15 specialties, as well as nurse practitioners and physicians assistants, and found that nearly 90 percent of 1,600 survey respondents agree there is a need for more professional content on rare diseases.

Existing resource-professional specialty associations; government-affiliated sources; patient or professional rare disease organizations; biopharmaceutical companies– are not widely utilized. Currently, most HCPs depend on the medical literature or local colleagues. However, more than seven in 10 healthcare professionals indicated the educational tactics that would be most valuable in informing them on the issues they face with diagnosing and treating rare diseases. About 500 respondents requested information from Global Genes on upcoming webinars and conferences, and patient education and advocacy programs and 250 would like to become part of a Frontline advisory panel as part of this partnership with Global Genes.

By identifying these learning gaps and preferences, Frontline seeks to work with the biopharmaceutical industry to develop innovative educational programs to effectively address the information needs of readers as well as support Global Genes, in its effort to build out its network of resources and support services for affected families and patients.

Obtain detailed findings from the research study entitled “The Challenges of Diagnosing and Treating Patients with Rare Diseases– Perspectives from Healthcare Professionals,” learn more about educational tactics clinicians cited as most valuable and discuss educational outreach programs and sponsorship opportunities. Reach the key contact at FMC, Elizabeth Katz, Publisher of Neurology Reviews® print and digital assets.

About Frontline Medical Communications

Frontline Medical Communications Inc. is the healthcare industry’s largest medical communications company, a leader in digital, print and live events. Frontline reaches 1.2 million+ physicians and HCPs with 30 print publications, in 20 distinct market segments, circulating to 800,000 HCPs in print; 125 eNewsletters; 35 active Web sites and multiple mobile apps delivering content daily; 15 live events; and daily medical news services generated from on-site reporting from major medical meetings.

About Global Genes

Global Genes is a leading rare and genetic disease patient advocacy organization. The organization’s mission is to eliminate the challenges of rare disease by equipping patients to become successful advocates, and through education and empowerment, become ‘activists’ for their disease. Global Genes does this through a growing portfolio of educational tools and resources, events, building out critical connections and funding innovations in science and technology that will impact patients within their lifetime. Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

3 thoughts on “Groundbreaking Research Confirms Need for Professional Education of Healthcare Providers on the Diagnosis and Treatment of Rare Diseases”

  1. Yoni Maisel says:

    As a Rare patient and advocate I have a mixed-bag of feelings. It is not possible to educate every healthcare professional, be they frontline (primary care) or specialist, on all facets of all rare diseases. It’s 100% impractical. A good overview of categories of rare diseases, and issues that necessitate followup is feasible.

    Where I think inroads can be made is in teaching doctors how to be critical-thinkers. Doctors must gain a higher level of insight and intuition in understanding that something with a patient is just “not right,” and following up in a timely and appropriate manner. With my two rare diseases, as is the case with many, all of the signs and symptoms were there. It would have taken a simple biopsy to diagnose one and a blood test the other. Missed opportunities delayed the diagnosis of one by 20 years, the other, about 10. All-too-familiar in the Rare world.

    Education of healthcare professionals is surely needed, but I think teaching those same professionals techniques inherent in “The Art” of critical-thinking would be a huge part of any remedy.

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