This is a guest blog for Mightycause by Anna Suarez, a rare disease advocate.

Fundraising can be a chore for nonprofits, but also an essential part of their successful operation. Asking an over-stimulated public to agree that your cause is worthy of their time and hard earned money can be challenging, especially when there is a multitude of important causes to which they can donate. Organizations that are part of the rare disease community, however, have additional setbacks in terms of the size of their audience and the less than sunny disposition of their causes.

A rare disease is one that affects less than 1 in 200,000 people in the United States, although many affect far fewer. On one hand, it’s great news that fewer people struggle with these conditions, but it subsequently decreases the number of people who have heard of or understand a particular disease. Often the public is only invested in the issues that affect them directly. This reality makes fundraising all the more difficult for advocacy and patient support organizations.

So, what is the best strategy for rare disease organizations to reach their fundraising goals in order to continue to support their cause? Read below for some tips.

1. Target campaigns to align with awareness holidays

Awareness holidays are a great way to maximize your coverage. They might be one of the few occasions where people beyond your regular audience are interested in your cause. One of the largest days for the rare disease community comes on the last day of February. The European Organization for Rare Diseases (EURODIS) is the main sponsor for the international Rare Disease Day, but many other organizations get involved and promote this holiday, like the National Organization for Rare Disorders (NORD). Individual diseases also have their own awareness days, however these may not get as much traction. Again, this is the result of a limited audience and potentially hefty competition if those days occur around the same time as more well known disease awareness days. For example, Breast Cancer Awareness Month tends to dominate coverage, which leaves very little room for other diseases to also step into the spotlight.

This is not to say that a rare disease organization shouldn’t also work on campaigns associated with their smaller-scale, individualized holidays. However, fundraising campaigns should not be limited to these hyper-specific occasions. Instead, rare disease organizations should look to align campaigns with other holidays that are still relevant to their cause. Rare Disease Day is a perfect example of a major holiday that can help garner attention and dollars for rare disease groups. Other non-specific holidays can provide a voice to organizations that advocate for a rare disease connected to the holiday’s overarching theme. For example, rare diseases that occur in the lungs might find success during Healthy Lung Month in October.

Optimizing the impact of awareness holidays can only aid in awareness of both a cause and any fundraising goals. Doing this successfully requires organization and allowing enough planning time in advance, which means that nonprofits should map out a list or even create a calendar of relevant awareness holidays. While there are many examples available online, it’s best to create one specific to the needs of your organization.

2. Find the right influencers and partners

Networking can be a powerful tool to help bring attention to your campaign. The rare disease community is small by definition, which only further necessitates working with like-minded organizations or advocates. These connections can be easily facilitated on social media or in person, and can help establish an ecosystem of influencers in the rare disease and health communities. Having a better understanding of the stakeholders in your niche can help to reveal potential partnerships that you previously may not have recognized.

Additionally, partner organizations will also be posting about their own events and awareness initiatives, which may be an opportunity to join their efforts and reach a larger audience. This would be a mutually beneficial relationship, with both organizations able to reach more people. It’s important to note that in this case it may not be appropriate for fundraising to be the first priority, especially to avoid commandeering another group’s initiative. However, building overall brand and disease awareness are still important outcomes that can help establish relationships or increase your follower base, both of which could lead to successful fundraising campaigns in the future.

3. Keep it as light as possible

When dealing with a cause that is less than cheerful, it can make asking for money all the more challenging. Rare diseases overwhelmingly have no cures, or in some cases, even relevant treatment options. This, coupled with difficulties in diagnosing the disease in the first place, can result in rather poor survival rates for these diseases. For example, the life expectancy for patients fighting mesothelioma, which is a very rare form of cancer, is on average only 1-2 years. In addition to poor survival, over 50% of patients struggling with a rare disease are children. While it may be necessary to touch on why this cause is so vital, grim statistics like these shouldn’t be the main focus of a fundraising campaign, as it can alienate donors and make it harder for the public to connect with and share the campaign.

Extensive studies have been conducted on how to best utilize emotional arguments for supporting various causes. Appealing to the emotions of potential donors is important, but should be done with respect. Some experts in this area believe that guilt and other negative emotions may encourage donations only in the short-term, and others say it’s ineffective all together, making this strategy unsustainable regardless. The public is bombarded with negative stories in the news and everyday life, which makes this type of messaging less and less effective.

Emotional appeals can be a powerful tool for fundraising, but positive emotions tend to have a more significant impact on behavior. Additionally, by creating more positive content, it’s more likely to be shared to a wider audience.

4. Maximize social media presence

Most nonprofits recognize the importance of a social media presence. As mentioned above, social media can be an excellent means of building connections and better understanding influencers in your community. It’s also important to establish your organization’s accounts and build a follower base outside of fundraising campaigns, i.e. you shouldn’t just use social media to ask for money. Building awareness of your organization overall will help establish its authority and lay the groundwork for future fundraising initiatives.

Rare disease organizations must find ways to optimize social media because without this medium, groups are missing out on a major segment of their audience. This could be crucial considering organizations in this field are already dealing with the confines of a small audience. For rare disease organizations, many of the tips mentioned earlier also apply for social media. Additionally, rare disease organizations should also spend some time identifying the relevant hashtags that can be used in their digital niche or for specific awareness days. There are also many great sources for tips on planning a social media strategy, creating visual, shareable digital content, or promoting an in-person event with digital platforms that nonprofits can use to generate new ideas to maximize fundraising efforts and engagement online. By putting together a comprehensive social media plan, rare disease organizations can better engage with potential donors.

There are many avenues for rare disease organizations to explore in order to best promote their fundraising efforts. Much of the work involved is preparatory in nature, and should occur before a specific fundraising campaign is developed. But each of these tips will help ensure that a campaign can be executed smoothly and hopefully deliver the dollars that rare disease organizations so desperately need.


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One thought

  1. Exactly! Additionally, through Social media include promotion of matching gifts in all social media twitter, Facebook, Instagram. I think this is a quick and easy way to share success stories and remind people of matching gifts as well.

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