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Rare Disease UX & Patient Education Experience

LimbGirdle.com

LimbGirdle.com is a disease state awareness (DSA) website designed to support people living with—or suspecting—Limb-Girdle Muscular Dystrophy (LGMD) and their care partners.

Services

UX Design, Information Architecture, Content Mapping, Design System Creation

Client

Sarepta

LimbGirdle.com rare disease website redesign supporting people living with Limb-Girdle Muscular Dystrophy and care partners.

The Problem

The site needed to create urgency and clarity around one key idea:

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New opportunities may be on the horizon—but you need a genetic test to confirm your diagnosis and subtype.

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 Learn your subtype → Get tested → Get treated 

This project had major hurdles to overcome not only technical but primarily internal within the agency.

  • Weak or inaccurate research findings from partners

  • Poor content mapping leading to more time spent in restructuring

  • Weak creative concept combined with limited visual assets

  • Site never launched due to client cutbacks

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LimbGirdle.com content-gap analysis identifying information needs in the rare disease patient journey.

The Research

To make sure the redesign was grounded in real needs, our research partners ran stakeholder discovery to better understand patient and HCP challenges, information gaps, and what "success" should look like for the digital experience.

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A major theme across the strategy was helping patients move forward through clinical suspicion to genetic testing stages with clearer education, better navigation, and fewer barriers.

Content map
LimbGirdle.com patient content map organizing education and information needs for the rare disease experience.
Reworking content map, sitemap creation
LimbGirdle.com sitemap draft showing the proposed information architecture.
Creative concept brainstorm
LimbGirdle.com creative concept exploration for a rare disease education experience.
LimbGirdle.com dropdown navigation interaction designed to improve wayfinding.

The Solution

To keep the redesign focused and scalable, I prioritized UX improvements that would make the site easier to navigate and easier to build on long-term.

  • A creative concept was created to visually distinguish the initiative and to communicate the idea of "opening doors to new possiblities"

  • Built a design system from the ground-up to support LimbGirdle.com and future LGMD site needs

  • Created a subtype search + filter tool to help users explore and get familiar with genetic subtypes—supporting urgency and motivation to pursue genetic testing

  • Restructured the information architecture + content mapping so key topics were easier to find

  • Improved navigation and way finding

LimbGirdle.com visual design concept showing the proposed rare disease website experience.
LimbGirdle.com design system boards defining reusable components for the rare disease website.
LimbGirdle.com subtype exploration tile supporting genetic subtype awareness.
LimbGirdle.com subtype exploration tile helping users learn about LGMD genetic subtypes.
LimbGirdle.com subtype exploration tile supporting education about Limb-Girdle Muscular Dystrophy.

Learnings & Outcomes

This project was a good reminder that in rare disease UX, clarity and empathy have to work together. The goal isn't just to educate—it's to help people take the next step with confidence, especially when the journey feels overwhelming.

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By combining a stronger content structure with a scalable design system and subtype-focused exploration tools, the redesign was built to better support patients in moving toward genetic testing and subtype awareness.

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Objectively, the creative on this could have been more unique and offered imagery that look and feel less cliché. This has a distinctly pharma look and feel to it that edges to close to cheesey. This is not a surprising outcome considering at a certain point our team members were rotating in/out with many hands touching it. This lead to duplicative work, overlapping responsibilities, and in a lot of cases having to work backwards.

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