• by Daniella Koren , November 25, 2016

Tips to make engagement programs more specific and effective 

The same can also be said about designing marketing communications that speak to these patients; this community presents with a unique set of characteristics that do not fall within easily definable patient categories.

What is the rare disease/undiagnosed community?

Individuals with undiagnosed diseases are those who struggle to find an underlying diagnosis for a chronic condition. Genetic, inflammatory, autoimmune, and autonomic conditions are prevalent causes for a number of these conditions. When creating a program to educate, attract, or retain a rare or undiagnosed patient, it’s important to consider the characteristics that these individuals share:

• According to Global Genes, the emotional toll is overwhelming. In addition to depression, anxiety, and isolation from family and friends, there is a mix of frustration at not having an answer, medical fatigue, and fear that a) the diagnosis is so rare or severe that it doesn’t have a name and b) doctors will judge their mental health rather than their physical symptoms. 

• The community has a strong appetite for information, and they are technologically savvy about how to research their symptoms.

• Action: Conduct research to know what these groups have at their fingertips online. Stay current and join a few groups to observe the trends in topics and communication.
• Despite the isolation from family and friends, undiagnosed and rare populations continue to connect to others through online forums and social media, where there is a high level of participation in online communities and support groups. 

• Action: Acknowledge their participation in social and online communities and reinforce the need to prioritize credible, fact-based information over the glut of subjective opinions.

Locating the defined touch points

Social media and online boards are some of the best means of connecting with rare disease and undiagnosed communities. Establishing a valued presence by publishing informative resources can even lead to the development of an opt-in email database for targeted communications tailored to their interests. An engaging and competent online presence is critical:

• Provide quality information and make it understandable. Members here want to know about their condition, symptoms, and issues. Although many in these communities have experience seeking healthcare, much of the relevant research is complex and difficult to digest. 

• Consider designing communications and categories based on constellations of common symptoms, rather than typically-identifiable disease categories. Tie these communications to educational resources that may point an undiagnosed patient toward an accurate diagnosis, or at least a better understanding of what may be causing their chronic symptoms.

• Provide support, validation, and empathy. Although passionate and determined, this is also a population that has often become frustrated by a confusing illness and the healthcare system. Many are looking for someone to listen to and understand them.

• Tailor subjects to meet their needs. According to an analysis of web inquiries to The Genetic and Rare Disease Information Center (GARD) during 2006 and 2011, individuals sought the following information:

• Information about treatment (47.0% and 33.3%)

• Disease prognosis (17.4% and 11.8%)

• Requests for specialists (14.8% and 11.8%)

• Information related to undiagnosed symptoms (11.9% and 16.2%) 

• “Inquirers were significantly more likely to ask about clinical research studies in 2011 than in 2006” (11.4% vs 2.9%)

• Basic disease Information (62.8% and 75.0%

A long-term relationship

When working with the rare disease and undiagnosed communities, it’s imperative to create effective categories for targeted communications, offer information that includes educational resources and support groups, and develop a human connection – a fact that often becomes lost in the jumble of CRM data. 

A strong program that provides answers, support and recognition of an undiagnosed condition can help members of this community continue their care and possibly find some of the crucial answers they are looking for.