EBRP Finds Increased Relevance — and Repeat Donors — on Rare Disease Day

Focusing your marketing efforts on one specific day of the year can be a double-edged sword. #GivingTuesday, for example, is an international day of charitable giving that directs the public consciousness toward charities and causes that might otherwise fly under the radar. But with so many nonprofits clamoring for attention at once, it becomes easier for donors to contribute without further commitment, or worse, for fundraising campaigns to become drowned out in the noise. So is corresponding a marketing campaign with a significant day of the year worth it? EB Research Partnership (EBRP) proves that there’s a way to do it right.

EBRP is the largest nonprofit dedicated to funding research aimed at treating and curing Epidermolysis Bullosa (EB). EB, the umbrella term for a group of life-threatening chronic skin disorders, affects half a million people worldwide. EB Research Partnership found its niche on Rare Disease Day, observed each year on the last day in February. EBRP inferred that pushing a marketing campaign on this globally-recognized day would not only attract attention toward their cause, but would also give them a platform to speak about their work, to educate their audience about what battling EB is like, and to help people better understand what families of EB sufferers go through. By combining efforts to raise awareness and to increase empathy, EBRP engaged its community and raised money to research a cure.

Executive Director Michael Hund knew that, done correctly, this day of calling for donations would create a ripple effect to develop a base of dedicated donors whose contributions would make a significant difference over time. For this year’s Rare Disease Day, EBRP decided to call for smaller donations from a large number of people, trusting that doing so would make a big impact over time. Their goal was to show their audience that even the smallest gifts could add up to make life-saving cures accessible to patients. Since EBRP utilizes a venture philanthropy model, the idea of a predictable, scalable revenue stream was particularly attractive.

This is where The RoundUp App comes in. EBRP knew that encouraging people to sign up for the app on Rare Disease Day was an excellent way to implement their diversified fundraising tactics. With the RoundUp App, donors sign up once to donate pocket change each time they make a purchase with a registered card. It’s not a one-and-done approach that creates a large influx of donations all at once without asking for any sort of commitment from donors. Rather, it is the setup to develop a solid group of repeat donors who provide a consistent stream of income.

To encourage signups, EBRP emphasized RoundUp’s accessibility, ease of use, and intuitive nature. Their message was simple: set it and forget it. They created a separate landing page on their website dedicated to the campaign, which explained the app and linked to a signup page. They channeled most of their marketing for the campaign through social media, where they found it very well received and effective in encouraging audience engagement. Tailoring their message based on market segmentation, EBRP leveraged different audiences to make the cause more relatable to the many people who haven’t heard of — much less witnessed — the devastating effects of EB. They created empathy, which is no small feat, especially for a nonprofit focused on a rare disease. EB Research Partnership spearheaded its social media campaign by leveraging the network of Pearl Jam lead singer (EBRP co-founder) Eddie Vedder.

Working with RoundUp helped streamline the marketing process. Calling for app signups allowed EBRP to simplify their message and helped them to stand out among the many other nonprofits calling for larger contributions to their own rare disease-related campaigns on the same day. The simplicity and novelty of RoundUp combined with the power of EBRP’s influence was a recipe for success. Michael estimates that 25 to 50 percent of contributions to this campaign came from donors who were entirely new to EBRP. Since these donors came through RoundUp, EBRP could trust that they would be contributing long term.

Looking forward, EBRP is enthusiastic to continue developing a sustained, continuous source of revenue by increasing their base of RoundUp donors. Their success on Rare Disease Day proves they have the passion and the know-how necessary to turn small ripples into big waves  — to turn sign-ups into healing, to turn small donations into cures. It’s an approach that requires a little faith. But in the long run, it’s worth it.

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