Three Things to Consider When Making Your Patient Advocacy Group Website

May 30, 2024

by Ben Forred
Founder, ZebraSite Studios

Everyone knows that their organization needs a website, and there are a million ways to get one. Whether you DIY your website with a platform like Squarespace or Wix, or you hire a designer, going into the project with your goals in mind is critical. Step one to making a good, professional impression is having a well put together website with clear calls to action, an approachable style, and intuitive flow. To help you along your website project, here are the top three things recommended for every patient advocacy leader consider when starting, or redesigning, a website:

1. Know your audience.

This seems like a no brainer, but it’s so easy to skip this step! The question to ask here is, “To accomplish my goal for this site, who needs to land here?” The tone of your writing, the information, the images that are used – jeez, even the colors you pick should all come from your answer to that question. For instance, let’s say your goal right now is to attract newly diagnosed families. You want them to become a part of the organization, enroll in the registry, and get involved. In this case, you’d want calls to action (buttons, links, etc.) that lead families toward the registry page, or the volunteer opportunities page. The colors will be calm and inviting, the information will be for the lay audience, and images of individuals living with the disorder would be chosen over a bunch of stuffy scientists in lab coats. A few years down the road, your goal might shift toward fundraising for research – time for a redesign!

2. Get the style right.

Once you’ve got your ideal website visitor defined, match their style. Individuals and families are attracted to welcoming and warm themes. Industry groups respond well to bold and authoritative vibes; it helps demonstrate you’ve got your act together. If you’re looking to attract researchers, images of free food and occasional sunlight will get you there just fine. Really though, you’d want to have a sleek site with organized sets of information – imagine an interactive page with links to notable journal articles. You don’t need to overthink this but keep an eye out for accessibility. Visitors may have disabilities that make it hard to visit pages with a ton of animations, more than a few colors, light text on a light background, etc. It’s better to have an approachable style people will use than a flashy website that distracts visitors. Sometimes less is more.

3. Take them on a journey.

What do all those stakeholders above have in common? Short attention spans. People don’t like to guess what to do on a website. According to the Nielsen Norman Group, the average website visitor spends 10-20 seconds on a site. On average, they only read a quarter of the information on a given page! So, what’s the trick? You need to consider the flow of information across the site, keep that information concise, and make sure they have an intuitive way to navigate. Does your menu have intuitive labels? Don’t make 50 sub-pages beneath each menu item. Condense similar content into one page instead of spreading it across the site. This step might take a bit of time to map out, so be patient!

Building a website can be intimidating and overwhelming, but if done right it will save you time and energy. Start by thinking through these three steps and you’ll already be better off than most of the internet. Of course, if you’re looking for a partner to help get you there, I’m always up for a chat! Feel free to visit us at and set up a free consultation.

Nielsen, J. (2018, January 6). How long do users stay on web pages?. Nielsen Norman Group.,those%20they%20don’t). 

Ben Forred’s journey through the rare community is deeply personal. He is a rare disease patient with around 15 years of experience in biomedical and clinical research in rare conditions. He led a global patient registry, called CoRDS, for seven years and have strategized with hundreds of PAGs on their organizational plans. He also built websites for small businesses, which got him thinking about the common “website pain point” his friends in patient advocacy deal with. Founding a web design agency, ZebraSite Studios, came from his genuine desire to support PAGs by offering custom web services that fit the rare disease community. 

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