Preparing for #RareDiseaseDay: Do stories change anything?

Valuable online “meeting” to discuss our impact in the healthcare field and in the general public when (and how) we tell our stories.

Colleen Young

By Emma Rooney (@blumencasey)

Headshot of Emma Rooney Emma Rooney

A rare disease is an uncommon disorder that on its own affects a minute percentage of the world’s population. Despite this rarity, when you look at rare diseases together, the list of identified diseases grows beyond 7,000 conditions, the highest percentage of these genetic. Rare Disease Day was started in 2008 by EURORDIS (the European Organization for Rare Diseases) to place a spotlight on this often neglected health priority. According to the patient advocacy organization Global Genes, rare diseases affect 350 million people worldwide. While rare diseases are extremely diverse, many people living with a rare disease confront misdiagnosis or having no diagnosis, nonexistent treatment options, and major inequities in accessing care and support. Rare disease groups have a history of banding together and forming umbrella organizations to share best practices and be more effective in working to strengthen the rare…

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