Rare Disease Report® to Participate in Rare Disease Day

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Editors will interview participants throughout the day’s activities

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"We love Rare Disease Day and being in attendance at the events in Washington on that day. And what makes the day even better for us is providing a means for those advocates to reach an audience they may not be reaching – clinicians.” - Jim Radke

Rare Disease Report®, which is the only rare disease media outlet with a clinician-based audience, will be participating in Rare Disease Day events, hosted by the Rare Disease Legislative Advocates (RDLA) on February 28, 2017, in Washington, D.C. In addition, Rare Disease Report, a website, weekly e-newsletter and quarterly publication, will be conducting interviews with patients and advocates in their portable video studio.

Rare Disease Report® assistant editor Andrew Black said “I am looking forward to this amazing event and being able to interview some of the rare disease community’s most active and caring advocates. By sharing their stories, we can help amplify their message.”

In making this announcement Rare Disease Report® Managing Editor James Radke, Ph.D. said, “We love Rare Disease Day and being in attendance at the events in Washington on that day. And what makes the day even better for us is providing a means for those advocates to reach an audience they may not be reaching – clinicians.”

Additionally, Radke will have an article, in collaboration with Global Genes, in a USA Today special supplement focused on rare disease being published for Rare Disease Day.

Rare Disease Day is held annually on Feb. 28 with a mission to give all patients with rare diseases a shared voice to educate the general public and increase awareness to advance research and influence treatment options. While a rare disease constitutes any disease that has less than 200,000 cases, there are about 7,000 rare diseases, which together comprise 25 million to 35 million people or approximately 8-10% of the population. It also takes four to seven years from symptom onset to diagnosis for the average rare disease patient, while most rare diseases have no treatment at all.

To help celebrate the day, the Rare Disease Report staff is welcoming all people to perform the zebra dance. For those wanting to learn more about why the zebra is a symbol of the rare disease community, feel free to contact Jim Radke at jradke(at)raredr(dot)com and he will be happy to provide you with an explanation.

About Rare Disease Communications®
Rare Disease Communications® is a health care communications and media company focused on the rare disease community and dedicated to raising awareness of rare diseases and orphan drugs so that patients will be diagnosed and treated more efficiently. Rare Disease Communications® is part of the Michael J. Hennessy Associates, Inc. family of businesses, based in Cranbury, N.J. MJH Associates is dedicated to improving quality of life through health care education, research and communication. To learn more, visit http://www.mjhassoc.com.

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Theresa Burek
Rare Disease Communication
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