Rare Disease Fundraising

Raising funds. Advancing cures.

Expert fundraising and communications designed to fuel rare disease breakthroughs.

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Rare Impact Agency pairs expert fundraising strategy with authentic storytelling to help rare disease foundations advance treatments and cures. We inspire communities, engage families, and build lasting movements.

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Our Valued Clients

It is a joy and an honor to serve these incredible rare disease foundations.

Decades of Expertise

We bring over 40 years of fundraising and communications experience to amplify your mission and raise funds.

Meet Our Team

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$500k

raised over 5 months for six clients

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$110k

raised over six Giving Tuesday campaigns in 2025

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150

designs created for clients over 4 months

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36

emails written for clients over 4 months

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100%

of clients loved our deliverables!

Values That Guide Our Work

Working with Rare Impact Agency means gaining a seasoned, mission-driven team that is fully invested in your success. We show up with expertise, empathy, and a deep belief in your foundation’s potential—making your fundraising easier, your communications stronger, and your path toward breakthroughs clearer. These five core values guide how we partner with you and how we help your organization grow, thrive, and move science forward.

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Rare Disease Expertise

We understand the science, the families, and the unique fundraising opportunities of rare disease foundations.

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Fundraising Leadership

We bring senior-level development experience to build effective strategies to grow your revenue.

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Science-Driven Storytelling

We translate complex genetic research into emotional, human-centered stories that inspire generosity.

Trusted Partnership

We become part of your team—working alongside you with care while building true partnership.

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Ready to Raise More Money?

Schedule a free discovery call to talk through your fundraising goals and create a custom package together.

Let's Connect!

Meet the Agency

Look inside our agency that is built to serve rare disease foundations. We exist to bring ease, strategy, and joy to your fundraising.

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Client Testimonials

They are a deeply empathetic partner who takes the time to truly understand the lived experience of our patients while effectively translating the impact of philanthropy—at every level—into a powerful, authentic narrative.

Sarah Cortell Vandersypen

Executive Director, United MSD Foundation

Shannon and her team are clear visionaries who don’t just ideate; they execute. Their deep understanding of the rare disease ecosystem truly sets them apart. They bring energy, clarity, and trust to every collaboration—you truly feel that they have your back and are giving their all.