Restructuring HANY's Website Around the Patient Journey

A content audit and information architecture proposal for the Hemophilia Association of New York. UX Research & Product Design Internship, May–August 2026.

 Role:

UX Researcher & Product Designer: Conducted a comparative content audit of four bleeding-disorder organizations, identified structural gaps in HANY's site, and proposed a new information architecture built around what patients and families actually need.

Tools Used:

FigJam: comparative content audit, gap analysis, information architecture, constraint-based prioritization

Context:

The Hemophilia Association of New York is a patient advocacy nonprofit serving people with bleeding disorders across New York. Its website is often the first place a newly diagnosed family looks for help.

When I joined as a UX Research intern, the site had grown page by page over several years. Nobody had stepped back to ask how it compared to what similar organizations were offering, or whether its structure matched how families actually search for help.

The Question:

I set out to answer two things: 

1. What do comparable bleeding-disorder organizations provide that HANY doesn't?

2. Which of those gaps matter most to the people HANY serves?

Method:

I conducted a comparative content and information architecture audit across four organizations: HANY, the New England Hemophilia Association (NEHA), the Florida Bleeding Disorders Association (FBDA), and the Hemophilia Foundation of Southern California (HFSCA). 

I chose them as best-in-class benchmarks, organizations widely regarded as among the strongest bleeding-disorder nonprofits in the country, each with a well-developed digital presence and an engaged patient community. 

For each organization I mapped every top-level section and every sub-page, recording not just what content existed but how it was structured and presented, whether staff pages were clickable, whether newsletters were browsable, how treatment centers were organized. The full audit took eight weeks to complete. 

What I found:

HANY's site was organized around the organization. Its peers were organized around the patient journey.

HANY's structure ran Mission → History → Staff, with a thin resources page. NEHA's resources section was built around what actually happens to a family over time: getting diagnosed, finding a treatment centre, returning to school with a 504 plan, managing joint pain, affording travel to appointments, mental health, genetic counselling. FBDA led with the conditions themselves including hemophilia A and B, von Willebrand disease, women's bleeding disorders, rare factor deficiencies, each opening to a dedicated page.

A newly diagnosed family arriving at HANY's site could read about the organization. To learn what they were actually facing, they had to click into "Advocacy," where HANY's explanations of hemophilia and its treatments were filed alongside legislative days and policy work.

What I proposed:

I restructured the site around six top-level sections, replacing a hierarchy built around the organization with one built around what a family actually needs, and when they need it.

Six top-level sections: About, Education, Support Services, Get Involved, Events, Contact.

The order follows a sequence rather than an org chart, understand it, get help with it, act on it. Education explains the condition, Support Services connects families to care and funding, Get Involved covers advocacy, volunteering, membership, and donation. About, Events, and Contact sit below them, because an organization's own material belongs after the user's needs, not before.

What I scoped out, and why: 

My audit surfaced ten gaps. The proposed architecture addresses five.

That was a deliberate choice. Information architecture is a promise about content, every section is a commitment that someone will write it, keep it accurate, and maintain it. HANY is a small organization with a small staff. Proposing sections on mental health, school and 504 guidance, and insurance navigation would have created navigation that led to empty pages, and for a patient advocacy site an empty page erodes trust faster than an honest absence.

So I prioritized against two criteria: how close each gap sat to content HANY already had or could realistically produce, and how early it appears in a family's timeline. The five I carried forward: bleeding disorder education, Medical ID, the Comprehensive Care Model, treatment centres, and the newsletter archive, met both. The remaining five are documented as a second phase.

Phase 2 is scoped but not proposed, the recommendation is to build it once there's staff capacity to maintain it, not before.

Outcome: 

I presented the audit and proposed architecture to HANY at the close of my internship in August 2026. The recommendation is with their team as they plan the next iteration of the site. Because the proposal is structural rather than cosmetic, adoption depends on their content capacity, which is exactly why I scoped it in phases rather than proposing everything at once.

What I'd do differently: 

I built this structure from competitor coverage rather than from users. That was the right call under an eight-week constraint, but it means the gap ranking reflects what peer organizations chose to publish, not what HANY's families actually struggle to find.

With more time I'd run a card sort with patients and caregivers before finalizing the hierarchy. I'd particularly want to test the label "Support Services" , it's the language a nonprofit uses internally, and a parent looking for help paying for travel to an appointment may well look under something like "Financial Help" instead. I'd also tree-test the proposed structure against real tasks: find your nearest treatment centre, find out if you qualify for a scholarship.