Rare Disorders - Part 1: The Lived Experience Sheds Light on How to Fundraise

Feb 29

Written By Katrina VanHuss & Otis Fulton, PhD

How do we at Turnkey For Good approach fundraising for these rare conditions? By emphasizing universal impulses like alleviating pain and suffering, and care for others. By focusing on the outcomes of these conditions rather than their rarity, we appeal to people's innate desire to help others in need and to care about them.

Many who work in social good believe fundraising for a rare condition presents unique challenges. They think these conditions lack a broad audience; they aren't widely cared about. Similarly, those experiencing rare conditions often grapple with feelings of isolation.

In the companion blog by Rebecca Stanfel, a member of the Foundation for Sarcoidosis Research community who lives with sarcoidosis, Rebecca shares her deeply personal journey. In doing so, she sheds light on the path forward.

Defined by the Centers for Disease Control (CDC), a rare disease in the United States affects fewer than 200,000 individuals, and in Europe, the threshold is even more stringent, impacting no more than 1 in every 2,000 people.

Assuming support depends solely on personal relevance is overly simplistic and counterproductive. This transactional mindset is rooted in classical economic theory, but that theory has been thoroughly discredited. Nonprofits thrive by appealing to prospective donors' aspirations for positive change and their desire to align with organizations that resonate with their values. Alleviating the impact of a particular rare disease could be one of many paths to self-fulfillment by a person who wants, quite simply, to care.

Our supporters care deeply, not out of obligation, but because compassion is inherent to who they are. Their involvement with nonprofits isn't just being "about" something – it manifests their innate desire to contribute positively to the world. A nonprofit provides that route.

Operationally, how might this nontransactional mindset manifest?

How does an organization diversify, grow volunteerism, and increase its donor base beyond those who are mission-affected?

People want to care for other people, and they want to be part of a community. As you read Rebecca’s blog, you’ll note her life improved when she found community through the Foundation for Sarcoidosis Research. While she lives with sarcoidosis, this same type of life enhancement happens when a constituent experiences community with people they align with while caring for others. Offer all the opportunity to experience a sense of community. For the nonprofit, this means structuring situations for constituents to be together and to be able to talk to each other.

How can organizations do that without alienating the mission-affected who’ve been die-hards?

People don’t like to be told what they should do. If you avoid doing (or allowing) that, the “die-hards” will welcome those new to the community and all boats will rise.

What should marketing efforts look like when only 20 people have this disease?

Marketing efforts should focus on the outcomes of the rare disease or condition, not primarily on how the outcome happens. For example, “People with immune deficiency sometimes live cloistered, lonely lives due to risk of infection.” The operative phrase here is “cloistered, lonely lives.” People understand that and relate to it. No one wants another human to be subjected to loneliness.

How do we navigate growth and leadership when volunteers, staff, or anyone may be in chronic pain, on heavy medication that leaves them impaired, etc.?

If our outreach and marketing focus only on those who are mission-affected, this will be a problem. We must build flexibility and support for them. This is achieved by extending outreach beyond those who are mission-affected.

Ultimately, most issues are solved by focusing on human outcomes of the rare condition rather than the specific way it hurts people.

A condition may be rare, but caring for others’ well-being is universal.