about rare impact agency
We exist to bring ease, strategy & joy to your fundraising.
We know how deeply you care about your families, your researchers, and the future you’re building. Our expert team brings that same heart to every strategy, story, and campaign we create.
About Us
Rare Impact Agency provides expert fundraising and communications support to help rare disease foundations accelerate progress toward treatments and cures.
Our work is powered by compassion, guided by science, and grounded in a deep love for the rare community.
We specialize at the intersection of genetic research, patient advocacy, and healthcare. Our team adapts sophisticated fundraising strategies for the unique world of rare disease, where diagnosed families are stewarded like major donors, family conferences honor both sponsors and family VIPs, and every message is rooted in meaningful human connection.
Together, we ignite the generosity that moves rare disease research and hope forward.
Our Founder, Shannon
Shannon Bowen, Founder + CEO, brings 20+ years of experience leading fundraising and communications teams with expertise in genetic research and rare disease advocacy.
Shannon Bowen
Shannon Bowen, Founder + CEO of Rare Impact Agency, provides expert fundraising and communications consulting to nonprofits leveraging her 20+ years of experience. She brings in-depth knowledge and passion for both genetic research and rare disease advocacy to her work.
Shannon is a former C-Suite nonprofit executive and an expert in both individual and institutional fundraising with a long track record of securing gifts up to $2M from individuals, foundations, corporations, and government entities. She’s raised over $75M total in her career.
Previous fundraising leadership positions include Chief Advancement Officer for Pacific Northwest Research Institute (PNRI), Senior Director of Development for the Center for Environmental Health, Vice President of Development for Making Waves Foundation, and Director of Development and Communications at Civicorps.
It was at PNRI that Shannon discovered a passion for rare disease advocacy. In 2023, she attended the Seattle Rare Disease Fair and was immediately impressed by everyone’s passion and knowledge of in-depth genetic research. She then forged new collaborations with local PAGs and PNRI’s two labs focused on rare disease research. In February 2025, she designed and facilitated PNRI’s inaugural Rare Disease Day scientific symposium with over 220 guests, 28 speakers, 44 scientific posters, 31 rare disease foundations, and 21 corporate sponsors.
Rare Impact Agency was founded in August 2025 and immediately welcomed seven new clients. Shannon’s expert team is well versed in scientific philanthropy and rare disease advocacy, bringing a nuanced lens to fundraising and communications for PAGs.
Shannon is also a career coach and thought leader in nonprofit leadership. She serves as the Co-Past-President of the Association of Fundraising Professionals (AFP) Advancement Northwest chapter and is a trusted trainer for AFP Global, NTEN, and several scientific and health philanthropy organizations. She is also married to a biochemist and is immersed in the groundbreaking world of scientific research across academic, nonprofit, biotech, philanthropy, pharmaceutical, and advocacy spaces.
Values That Guide Our Work
Trust
A compassionate partner you can count on.
Our team collaborates closely, offers strategic counsel, and brings care and humanity to every interaction—honoring the families, stories, and missions at the heart of your work.
Storytelling
Translating science into stories that inspire.
Complex genetic research is transformed into clear, emotional stories that inspire donors, connect families, engage corporate sponsors, and build excitement for breakthroughs.
Expertise
Decades of experience by your side.
Your work is led by a fundraiser with 20+ years of experience and delivered by a specialized team providing strategic fundraising, clear messaging, and high-quality execution.
Ease
Fundraising without the operational burden.
Comprehensive fundraising and communications support allows you to stay focused on advancing research, clinical care, and family support.
Results
Powering progress toward treatments & cures.
Strategies, systems, and stories are designed to grow your fundraising revenue, strengthen your connection to your community, and fuel real scientific progress.
Our Expert Team
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.
Senior Strategist
Senior Strategist Louise Maxwell brings 20 years of strategic communications experience for scientific and healthcare nonprofits. She is a former C-Suite communications executive who is an expert in writing blogs, emails, press releases, and social media as well as creating compelling content through photo, video, design, and podcasts. With deep connections in the rare disease community, she translates complex science into inspiring stories for donors.
Louise Maxwell
Louise is delighted to join Rare Impact Agency, bringing a deep commitment to supporting rare disease foundations and the families they serve. She has more than 18 years of experience in healthcare and biomedical research communications, including senior leadership roles at Pacific Northwest Research Institute and Seattle Children’s.
Louise holds a Master of Communication in Digital Media from the University of Washington and draws on a lifelong foundation in the arts to help organizations translate complex work into clear, compelling narratives that inspire trust, engagement, and investment.
Graphic DesignerS
Graphic Designers are experts in Canva print and digital designs tailored to each client’s branding, style, and personality. They bring a fresh approach to clients' designs to breathe new life into tried-and-true brand elements, to capture donors’ attention, and to deepen engagement with your community. Their work ranges from social media collateral, impact reports, corporate sponsorship brochures, printed letterhead, envelopes, and remits, email designs, Facebook ads, and more.
Project Manager
Project Manager is a master in ensuring that all deadlines are met on time with the highest level of quality. She guides clients through the intake process, organizes all materials, coordinates printing projects, manages contracts and invoices, and optimizes spreadsheets, data, and mailing lists for clients. Our clients feel fully supported and in-the-know of project progress and upcoming deadlines.
Data Strategist
Data Strategist has built five donor databases for Shannon and is a pro in transforming real-life development practices into actionable data. They are a wiz at exporting data, cleaning it, re-organizing it, and importing it into a custom database that meets your needs. They also pull lists, create new fields, and facilitate other data management projects to optimize your data so you’re making informed strategic decisions.
Peer-to-Peer Fundraising Strategist
Peer-to-Peer Fundraising Strategist is an expert in running successful P2P campaigns for small-to-mid-size-nonprofits. She has raised $150k+ in P2P campaigns and knows the best technology platforms and strategies to implement for campaign success.
Grant Writer
Grant Writer brings 10 years of grant writing and grants management expertise for scientific organizations. They are a pro at explaining complex science in simple, persuasive language and are excellent at the detailed organization needed to land six-and-seven-figure grants. They also conduct in-depth prospect research to build strategic prospect pipelines.
VIDEOGRAPHER + PHOTOGRAPHER
For Event Support, we love to bring our expert Photographer and Videographer Derrick Jones-Nelson to capture high-impact photography and videography to power your content creation for the next two years until your next in-person family conference. Shannon and Derrick worked together to capture photo and video for PNRI’s Rare Disease Day. You can view videos here. They have since partnered on projects for Rare Impact Agency and its clients.
Derrick Jones-Nelson
Derrick Jones-Nelson is a Creative Director, filmmaker, and founder of Civic Frame, a lean cinematic studio that helps mission-driven organizations communicate with clarity, confidence, and emotional impact.
Over the past decade, Derrick has shaped visual narratives for political leaders, advocacy groups, and community-focused organizations across the Pacific Northwest and beyond. His approach blends documentary sensibility with strategic messaging, allowing him to translate complex issues into stories people feel.
He’s known for his ability to distill complexity into human-centered stories, coach leaders on message, and deliver high-quality content at the speed today’s platforms demand.
Derrick’s work has supported agencies and organizations including GMMB, Powerhouse Strategic, Upper Left Strategies, PNRI, and Churchome.
We Believe Hope Is a Strategy and Joy Is Part of the Cure
Through thoughtful storytelling and expert fundraising leadership, we help you grow your impact, inspire your community, and raise the resources needed for breakthroughs.
Our Valued Clients
It is a joy and an honor to serve these incredible rare disease foundations.
Client Testimonials
Rare Impact Agency has been a steady, trusted partner during some of the most important moments in our organization’s growth. They helped us find our voice, trust our vision, and step forward with courage. As a rare disease organization led by families, that kind of partnership is invaluable.
Shannon and her team are clear visionaries who don’t just ideate; they execute. They are highly organized, consistently on top of every detail, and deeply reliable. Their knowledge of the rare disease landscape is matched by a genuine passion for this work—and that commitment is transparent in everything they do.
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