What are the narratives of rare diseases that need to be changed?
Narrative 1: Rare diseases only affect a small number of people.
Reality: Rare diseases are indeed individually rare but collectively affect a large number of people. Approximately more than 300 million people are living with rare diseases in the world. It is an understatement to say rare diseases only affect a small population while millions of people are affected worldwide.
Narrative 2: Due to the reason that rare diseases only affect a small population, there is not enough that can be done to help individuals with rare diseases. Larger numbers are needed to influence change for individuals who have rare diseases.
Reality: Rare diseases are indeed individually rare but collectively affect a large number of people. Approximately more than 300 million people are living with rare diseases in the world. It is an understatement to say rare diseases only affect a small population while millions of people are affected worldwide.
Narrative 3: People with rare diseases are cursed. Having a child with a rare disease is a form of punishment for the parents because these parents did something wrong.
Reality: This narrative is a taboo that spreads stigma in our societies. About 80 percent of rare disorders are
genetic. All rare diseases are medical conditions. Rare diseases have nothing to do about the right are wrongs
that someone has done. There are medical conditions that can affect anyone or anyone’s child.
Narrative 4: Rare diseases have no cure. There is no hope for rare disease patients because these individuals are going to die sooner or later.
Reality: Everyone is bound to die at some point, even healthy people. This shouldn’t be a reason to lose hope for individuals who have rare diseases. 95 percent of rare diseases do not have treatment or a cure. However, affordable measures can be taken to help make their lives comfortable and give them quality lives as best as possible.
Narrative 5: Those with rare diseases aren’t allowed to go to school or get jobs because they aren’t competent enough to be in these spaces.
Reality: There are rare diseases that can impair the abilities of these individuals to learn and perform certain
activities. However, some rare diseases do not impair these abilities. For rare diseases that impair certain abilities, schools and workplaces can provide alternative adjustments just like other patients with special needs.
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