The road to patient advocacy can be a long haul especially for those living with a rare disease. The waiting time, the unknown and the lack of education can leave patients and their caregivers grasping for even the littlest of information and support from medical communicators, physicians, and the like. Colleen Plunkett’s son K.E. Plunkett has gone through a tremendous…
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One Patient’s Vision Towards A More Inclusive Environment For Rare Diseases
Madaline Lesieur was diagnosed in 2001 with Hypereosinophilic Syndrome (HES), which is defined by The American Partnership for Eosinophilic Disorders (APFED) as: … A group of rare disorders in which high numbers of eosinophils are found in the blood and tissue, for prolonged period of time (6 months or more) for which a cause cannot be found. While most people…
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A Look Into The Industry
Medical communicators are essential workers that bridge the gap between patients, medical personnel, physicians and more. Their job rolls expand into various different categories that work to help patient advocacy, especially in the digital space where conversations are being built. The following information has been broken down to help understand some of the definitions that make up the field. Furthermore,…
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Video: Physical Disability & The Embodied Experience
“Physical Disability & The Embodied Experience” acts as an example on how medical communicators’ can use video to help facilitate information and awareness. I have created this video which has been tailored to physical disability and the embodied experience which works to help educate others on this concept and how we can take action. The following video credits participants Visiting…
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Rare Disease Day at NIH Conference
National Center for Advancing Translational Science (NIH) #RDDNIH On March 1, 2021, I attended the virtual Rare Disease Day at NIH Conference where I was able to see how medical communicators can translate information into digital patient advocacy. This included patient stories, special topic discussions and more. Key spotlights looked over to Amyotrophic Lateral Sclerosis (ALS), which is also referred…
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An Executive Director’s Take on Medical Communication
When you hear the term medical communication what is the first thing that comes to your mind? Maybe you are thinking of patient advocacy, or the mediums that go along with the field… The field of medical communication is made up of a vast array of mediums, tools and positions that help to facilitate patient advocacy. The digital space is…
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A Day In The Life of Communications Manager, Amity Westcott-Chavez
Digital patient advocacy is one area of the profession that medical communicators specialize in especially in regards to rare disease focused organizations. This past February I had the chance to speak with Communications Manager for The American Partnership for Eosinophilic Disorders (APFED), Amity Wescott-Chavez on her role as an essential worker in the field. This is part one of a…
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Welcome
Did you know that according to Rare Disease Day there are 300 million people living with a form of a rare disease resulting in over 6,000 rare diseases that have been identified? With this in mind medical communicators are essential to the field of digital patient advocacy. Communication amongst the online space with patients poses major gaps in the system.…