About RUNX1

The RUNX1 Research Program (RRP) supports families affected by RUNX1 familial platelet disorder (RUNX1-FPD), a rare inherited condition that raises the lifetime risk of blood cancer. RUNX1-FPD can only be confirmed through genetic testing, so many families go years without a diagnosis, or never receive one. Helping those families find us is at the heart of this role.

Founded in 2016 by Monica and Tim Babich, a patient family, RRP connects patients, clinicians, and researchers and funds research aimed at preventing blood cancer before it starts. Our work includes several grant-funding mechanisms, the RUNX1 Patient Data Hub, and our X-Out Blood Cancer awareness campaign.

About the Role

A parent navigating a genetic diagnosis, a clinician seeking resources, a researcher exploring a new study, and a donor considering a gift need different information. You will help each audience understand our work and take a useful next step.

Reporting to the President and Executive Director, and with part-time support from an experienced Communications contractor, you will turn organizational priorities into clear communications, effective outreach, and strong visual design. We are looking for a well-rounded communications professional, ideally with experience in patient advocacy, biopharma, or healthcare, and a solid grounding in biology or genetics. Many in our audience are clinicians and researchers, so scientific accuracy matters as much as clarity.

What you'll own

• Scientific communications: Translate research, clinical studies, and program updates into accurate, accessible content for patients, clinicians, researchers, and donors. Coordinate scientific and program review before publication.
• Website content and discovery: Own the website as a resource for everyone we serve. Help not-yet-diagnosed and newly diagnosed families find us by improving how people searching for answers about inherited platelet disorders and blood cancer risk discover our site. Make sure every audience, including families, clinicians, genetic counselors, researchers, donors, and industry partners, can quickly find what they need when they arrive. Keep resources accurate and the site easy to navigate.
• Design and visual communication: Create digital flyers, event graphics, brochures, and other visuals that turn content-heavy information into something clear and, where appropriate, engaging. Keep the website current, cohesive, and evolving so it stays a living resource, and maintain consistency with RRP's brand and visual style.
• Audience outreach: Plan targeted email, newsletter, and digital campaigns. Reach clinicians, genetic counselors, and researchers through professional networks, peer organizations, and co-promotion partners. Run small-budget paid campaigns using social media advertising, AI-driven advertising tools, and Google Ad Grants.
• Social media and community: Manage RRP's social channels as a place where our stakeholders feel informed and connected. Share research updates, patient stories, and event news, respond thoughtfully to comments and messages.
• Data, AI, and improvement: Use website, email, social, registration, and survey data to assess engagement and recommend and implement changes. Help manage our CRM’s data, including segmentation, clean-up, and reporting. Identify practical, responsible uses of AI and automation that help a small team work well.
• Fundraising and impact communications: Develop research stories, donor updates, campaign materials, and the annual Impact Report. Support proposal content while the Executive Director leads major donor relationships and fundraising strategy.
• Planning and delivery: Maintain the communications calendar, set clear briefs and deadlines, and coordinate reviews. Produce content directly, repurpose recordings and existing resources, and handle time-sensitive communications.
• Event communications: Promote webinars and conferences and manage related communications, including flyers, invitations, and registration updates. Event logistics and technical support are handled by program leads and outsourced partners.

Who you are

• You write clearly and can adapt complex biomedical information for different audiences without overstating findings. You have a solid grounding in biology or genetics. A master's in a relevant life science is preferred, or equivalent knowledge gained through work.
• You have three to five years of practical communications or marketing experience, ideally in patient advocacy, biopharma, healthcare, research, or a mission-driven organization, and you can show work you have independently planned and delivered.
• You have a strong design eye and create polished, clear visuals in Canva or similar tools.
• You are comfortable with Squarespace or an equivalent web design tool, including simple plug-ins, code injection, layouts, and page elements. You also work confidently with email platforms, CRM databases, Google Workspace, Asana, spreadsheets, and surveys, and you can interpret analytics and learn new tools quickly.
• You confidently approach busy clinicians, researchers, and potential collaborators. You bring professional judgment, attention to detail, and a thoughtful approach to patients and families, and you handle patient stories and information with discretion and consent.
• You are a self-starter who is reliable, consistent, and comfortable being part of a small, remote team. You prioritize realistically, follow through, communicate well asynchronously, and respect colleagues' expertise. Occasional early-morning calls with our founders, who are based in England, are required.

Who you'll work with

You will work closely with our Director of Patient Engagement and Clinical Programs, and you will have part-time support from our Creative contractor with help for design, video, writing, social media, and website work. The Executive Director, together with the Board, sets organizational direction. You will work closely with the Executive Director on scientific review and on all research-related communications and fundraising.

Location and compensation

This is a full-time remote role open to candidates based in the United States (ideally Central/Eastern time-zone). Once a year travel to our annual conference is required. $85,000 to $100,000 per year including healthcare benefits, based on experience. 401k benefits: 8% match on contributions after the first 12 months of service.

We look forward to learning how you could contribute to RRP's mission. RRP is an equal opportunity employer. We welcome applicants of all backgrounds and do not discriminate on the basis of race, color, religion, sex, sexual orientation, gender identity, national origin, age, disability, genetic information, veteran status, or any other legally protected characteristic.

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