• by Daniella Koren , March 3, 2016

I’ve had the privilege of talking to those touched by or living with rare disease. This post reflects on statistics and insights gained from patients, caregivers and healthcare providers.

According to Global Genes, nearly 30 million Americans are affected by approximately 7,000 rare diseases, (“rare” defined as affecting 200,000 Americans or fewer per year). That’s one in ten Americans; and worldwide, it’s estimated that 350 million people suffer from a rare disease.

Despite the large and emerging impact of this global issue, according to the Everylife Foundation for Rare Diseases, only 5% of rare diseases have an FDA-approved treatment. Moreover, approximately 50% don’t have a foundation supporting or researching their rare disease.

What these statistics point to is that rare diseases aren’t so rare, funding is needed to increase approved treatments, and patient and caregivers need resources in this underserved arena. It is clear that we must further explore how to create connectivity, communication and support.

Here are insights to be mindful of as you create marketing initiatives for the rare disease community:

1. Network on the coasts

People who live on the East/West Coast are generally more knowledgeable about their condition. Patients and caregivers want to network with those who have the best medical care so they, too, can learn about the approaches.  

2. The beginning is dark

Every respondent shared this comment: “There was no information, I had no clue what to do next ... we were in the dark.” It was mind-boggling to me how common this was, and although we have Google, there is a void — online, from healthcare providers, in the community.  

3. Facebook is great, but daunting

Most use Facebook religiously to connect with others in rare-disease groups. However, it’s time-consuming to filter through content to identify knowledgeable peers. One caregiver mentioned she deliberates about whether to post questions, because there will be many responses, but only a few gems. Despite this, there are Facebook pages for most diseases with vibrant, active communities.

4. Expect to give and receive

For those early in their diagnosis, it’s all about gathering as much information as possible, creating a plan with their healthcare provider, and accepting support. For those who have been living with a rare disease, or for caregivers who have lost a loved one, giving and fundraising become the focus. I spoke to caregivers who had lost a loved one, and found that their connection to the rare-disease community was stronger than they realized. With this, many have become support group leaders and continue to support patients with groups, fundraisers, and ongoing phone and email conversations. Those managing a rare disease, or living with someone who suffers from one, have amazing 20/20 hindsight vision, and can really help others in their community.  

5. Look beyond the disease

One interesting, and now intuitive, insight I gained from one caregiver was that although talking to others within a rare-disease community is important, there may be aspects of managing the disease that are found in other rare (or common) diseases, too. For example, if someone has a child who requires a feeding tube, talking to another about food preparation, cleaning, placement, etc. is helpful, regardless of the disease. To broaden their support network, caregivers may think about their disease traits, and go beyond one community to seek out others with similar experiences.

As healthcare marketers, we must continue to learn more about the needs of rare-disease communities so that we can help deliver value, resources and empowerment for this underserved population.