Global Genes serves millions of people impacted by over 10,000 rare diseases, many of whom are navigating complex medical and emotional journeys without clear support systems. Despite the organization’s powerful mission and extensive content library, their website had become difficult to navigate, fragmented, and unintentionally inaccessible.

Global Genes had a vast ecosystem of valuable resources, but their digital experience was falling short for the very people who needed it most. Users—including patients, caregivers, researchers, and advocates—struggled to find relevant content, connect with peers, or engage meaningfully with the community. The platform lacked personalization, accessibility, and a clear structure, leading to lost opportunities for support, education, and engagement. Technical debt, fragmented navigation, and outdated infrastructure further limited its reach—especially on a global scale.

We reimagined the Global Genes website as a centralized, scalable platform that could meet the rare disease community’s diverse needs—whether emotional, informational, or technical. Our team:

• Redesigned the site architecture and navigation for clarity, flexibility, and accessibility
• Implemented machine learning to personalize event and resource recommendations
• Integrated the Data DIY training series to empower patients and advocates as data stewards
• Built a responsive, mobile-first design that served users across devices and abilities
• Enabled researcher access to the Rare Data Exchange, surfacing community-contributed insights
• Created an easy-to-manage backend and trained the Global Genes team for long-term autonomy
• Unified voice, tone, and visuals across all touchpoints to reinforce Global Genes’ mission

Worked closely with Global Genes to identify and define core audiences: newly diagnosed patients, caregivers, advocates, researchers, and global partners. Mapped user journeys to understand needs across emotional, informational, and technical touchpoints.

Reviewed existing content repositories, CMS architecture, and third-party tools. Conducted a full content gap analysis and mapped critical resources to user goals. Audited the technology stack to uncover inefficiencies and inform a scalable rebuild.

Evaluated the previous site’s structure and user experience—surfaced pain points around accessibility, searchability, and clarity. Discovered that scattered, untagged resources often led to missed opportunities for connection or support.

Audited site analytics and marketing tech performance. Developed a revised channel and content strategy—including SEO enhancements and messaging refresh across web, email, and social.

Collaborated with developers and data teams to architect a backend that would support up-to-date rare disease data integration, ensuring users had access to evolving, condition-specific resources.

ML-powered event/resource recommendations

Redesign of IA and navigation

Data DIY Training Integration (Zuck Initiative)

Rare Data Exchange researcher access

Plain-language content + accessibility rewrite

Donation system redesign (mobile-first)

Email signup and SEO optimization

Backend CMS rebuild + training

Social media cross-channel messaging updates

ML-Powered Recommendations
Helps users discover relevant events and resources via behavioral + profile data.
→ High impact, medium feasibility, high alignment

Redesigned Information Architecture
Improves wayfinding and access to toolkits, events, and condition-specific content.
→ High impact, high feasibility, core to user success

Data DIY Training Integration
Empowers users to understand and steward health data through 4-module series.
→ High strategic value, medium urgency, unique differentiator

Rare Data Exchange Access
Enables researchers to explore patient-contributed condition data.
→ Medium urgency, high innovation, high impact on research partners

Plain Language + Accessibility Rewrite
Delivers readable, emotionally attuned content for low-literacy and global users.
→ High impact, broad reach, foundational to UX

The redesigned interface delivers a clean, flexible layout across devices—built with accessibility, clarity, and emotional sensitivity in mind. Visual hierarchy and white space were carefully balanced to reduce cognitive load for users in high-stress search moments.

Global Genes launched its Data DIY training model—a four-part series designed to empower patients, caregivers, and advocates to become confident data stewards.

CHALLENGE

Global Genes—a leading nonprofit supporting the rare disease community—had a sprawling website filled with vital resources, but the user experience was disjointed. Content was difficult to find, resources were scattered, and outdated technology limited accessibility and real-time data updates. Despite their strong mission, the digital platform wasn’t effectively serving the needs of patients, caregivers, or advocates navigating complex health journeys.

GOALS

• Redesign the website to deliver a seamless, accessible, and empowering experience for diverse audiences.
• Unify messaging, tone, and visual identity across all digital touchpoints.
• Build a modern, scalable technology stack to support future growth and content maintenance.
• Connect users with the right resources at the right time through personalized and intuitive UX.
• Strengthen engagement through improved SEO, social reach, and email conversion.

 

As the lead UX and UI designer for the Global Genes website transformation, I championed a design-led approach to solve complex usability challenges and elevate the organization’s digital impact. The project aimed to unify fragmented resources into a cohesive, accessible experience that could better serve the rare disease community.

From the outset, I partnered with stakeholders and a cross-functional team to define a strategic vision grounded in empathy, functionality, and clarity. We began with comprehensive research—including UX audits, stakeholder interviews, and user behavior analysis—to uncover pain points around navigation, accessibility, and discoverability.

These insights fueled the design direction. I developed a new information architecture and modular design system that prioritized user autonomy, allowing visitors to self-identify their needs and dive deeper into content pathways at their own pace. Accessibility best practices were embedded throughout, ensuring the platform met the diverse needs of its global audience.

Beyond UX and interface design, I played a central role in aligning the website’s technical and marketing ecosystems. Working with SEO strategists, I supported the development of a content and keyword strategy that elevated organic visibility while reinforcing Global Genes’ thought leadership. I also collaborated with developers to integrate third-party tools, streamline backend systems, and ensure long-term scalability.

The outcome was more than a website redesign—it was a reimagining of the user experience through the lens of design thinking. The new Global Genes platform is intuitive, responsive, and future-ready—delivering clarity, connection, and confidence to a community that depends on timely, trustworthy information.

Figma, Miro, Adobe Creative Suite, Google Analytics, Hotjar, Amplitude, FullStory

As UX and UI lead for the Global Genes website transformation, I worked closely with stakeholders and cross-disciplinary partners to reimagine how the organization connects with its global rare disease community. My role focused on crafting a strategy-led, user-first experience that addressed both organizational goals and community needs.

We began with an in-depth audit of the existing digital presence—reviewing content architecture, usability challenges, SEO performance, and technical constraints. Through stakeholder workshops, user research, and persona mapping, we uncovered critical gaps in how patients, families, and researchers navigated the site and accessed resources.

From these insights, I led the design of an intuitive and accessible user interface that simplified search and discovery. We created a clean, responsive layout and improved content hierarchy to ensure users could find relevant disease-specific resources with ease. Simultaneously, we architected a new technology stack that aggregated real-time data from various sources—ensuring that disease information remained up to date and actionable.

Our team also created a comprehensive content and communication strategy, including messaging guidelines, tone of voice aligned with patient perspectives, and a multi-channel outreach plan across social, email, and events. This helped unify the Global Genes brand voice while extending its reach.

To support scalability and sustainability, we built a powerful yet manageable backend system, trained internal teams to maintain the platform, and developed a flexible CMS framework tailored to editorial workflows.