• Patient Voice

    The Road to Patient Advocacy in Rare Diseases

    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…

  • Patient Voice

    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…

  • Conference

    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…

  • About

    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.…

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