• by Daniella Koren , September 6, 2016

There’s little in life as jarring as being diagnosed with a serious disease like cancer or diabetes; the news irrevocably changes the lives of both the patient and their family. Yet as difficult as it is, there are many avenues to get information and connecting with others who are dealing with a similar challenge. But for those who learn that they have an illness that is so rare most people have never even heard of it, the scenario can be quite different. 

The diagnosis itself is isolating, but when you consider that there may be few similar cases in the world, fewer physicians who recognize it, and fewer organizations for support, individuals with rare diseases face unique obstacles. 

Little attention

Unlike diseases such as breast cancer and heart disease, which get significant media attention and garner massive support in the form of research and fundraisers, many rare diseases (those that affect fewer than 5 people in 10,000), are largely unknown or poorly understood. More common illnesses are supported by organizations that push for research funding and put together local and national awareness events, and many more individuals have been affected by those conditions. 

In contrast, often only family members, a handful of caregivers, and those suffering with a rare illness are aware of what they are going through. According to Global Genes, approximately 50% of rare diseases do not have a specific foundation supporting or researching their condition. 

The challenges: Delayed diagnosis, lack of support, and limited treatments

Many individuals with rare diseases find themselves in a world that doesn’t recognize their pain or currently possess the knowledge to treat them. Despite the fact that there are a host of research and development efforts underway to find new medications, 95% of rare diseases don’t have an FDA-approved drug treatment. And when you consider the fact that new diseases continue to emerge frequently, both patient isolation and the pressing need for novel treatments will continue unless more attention can be drawn to these conditions. 

An individual with Castleman’s Disease, a disorder affecting the lymph nodes, detailed these challenges:

“The doctor I saw was perplexed by my condition so he sent me to get a couple dozen tests. A few days later while sitting outside the campus coffee shop, he told me in a calm, yet stern tone that I should see a cancer specialist in Houston. I was speechless … After the tests, it was clear that I did not have cancer, instead I became part of the less than 1 in 100,000 cases of Castleman’s Disease reported globally. I felt alone and isolated, like no one could help because no one knew what it was or how to treat it.” 

Solutions on the horizon 

More organizations are being formed to address the medical and emotional needs of those with rare diseases. Jared Heyman, whose sister suffered with a rare illness, founded CrowdMed to bring together medical experts to address some of the most complex cases. This platform allows patients to submit their information and get diagnostic and treatment suggestions within days. CrowdMed has become a viable resource that empowers patients. 

As healthcare marketers, we can play a role in educating patients and healthcare providers about these conditions, as well as reaching out to sufferers to provide support resources. Avenues to achieve this goal include:

Supporting the efforts of individual disease advocacy groups and partnering with them to spread awareness and help generate R&D funding.

• Directing patients to resources that help them discover a support network, such as the Rare Disease Clinical Research Network.

• Partnering with organizations like the National Organization of Rare Disorders and creating awareness of events like Rare Disease Day through social media and other channels.

The National Organization of Rare Disorders’ motto, “Alone we are rare, together we are strong,” illustrates the value that healthcare marketers can bring to the effort, by spearheading campaigns that create awareness and action.