My mom who lost a child to a Tay-Sachs Disease once said to me, "The likeliness you have a specific rare disease may be 1/200,000 but when you or your child are the 1 – the number 1 is the only thing that matters."
1. The rare disease market is a made up of many very small populations. A Rare disease is defined as a group that has less than 200,000 diagnosed, and there are approximately 7000 rare diseases to date.
That being said, many rare diseases have much less people diagnosed. For example, in my book, An Ordinary Day – Kids with Rare Genetic Conditions, one of the families I photographed and interviewed had two kids who have NGLY1 – at that time, only 30 people in the world were diagnosed with NGLY1.
The low numbers of people affected by a specific rare disease presents a dilemma to marketers who are accustomed to targeting millions with more typical ad campaigns. Outreach to target these smaller audiences differs.
2. A Highly Educated & Informed Group. Often times people with rare disease are misdiagnosed or not diagnosed at all. Doctors don’t always have the answers. They may have seen one or no patients with the disease that you have.
Of the 27 people with rare disease that were featured in my book, almost all of them felt they knew more than the doctors about their condition and learned mostly from experience and sharing information with other people who have the same disease.
One parent told me that when their child was diagnosed, the doctor knew so little about his disease that he handed them a printout from Wikipedia to explain the diagnoses and that was it!
Since doctors don’t always have experience with the disease, this group tends to be highly informed and self-educated but constantly looking for new information and research. Finding a diagnosis helps with treatment, health, success and quality of life which is paramount for those inflicted with rare diseases. For marketers, building relationship with patients, caregivers, and doctors will be key and this population gives opportunity for creativity and a hands-on approach.
3. The Rare Disease community is an incredibly motived and effective group of Individuals . I am always impressed how much progress these rare disease groups, organizations and individuals make by advocating, raising money, and researching treatments.
Check out Jar of Hope for example. https://jarofhope.org/about/ When Jim and Karen Raffone got the devastating news that his son had Duchenne Muscular Dystrophy and the Dr. said, "Go home, love your son, there is nothing we can do for him." Jim and Karen set out to reverse the seemingly insurmountable odds against them—and they have been doing that for thousands of boys like their son.
Often what these rare disease communities lack in numbers they make up for in motivation.
Thanks to the advent of social media and the internet disseminating and sharing information is helping people feel less isolated and alone while providing a place to share ideas, observations and information that can improve their day to day lives.
Un-like Diabetes, Alzheimer's, and more mainstream diseases that effect masses, the rare disease community affects small numbers often which Pharma companies don’t invest time and money to find treatment or cures.
As a result, those with rare diseases and their caregivers are composed of constituents who are self- educated about their disease or condition, highly motived, and a tightly knit community that relies on sharing information.
Check out these campaigns for examples.