Building a Website

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Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

Tips Before You Start

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

  • Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
  • By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
  • Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
  • Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
  • Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

Making a Website

Web Site Hosting

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:

  • GoDaddy - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.

One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."

  • Webtrix - "Very reliable and helpful. Easy to get in contact with when you have questions."
  • Datarealm Internet Services - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
  • ASP Webhosting
  • Rackspace - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

Web Site Designers

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:

Here's a list of companies that other disease-specific organizations have used and approved of their work:

  • Accurate Imaging
  • Cermack
  • Firespring - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
  • We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
  • A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
  • I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

Using a Content Management System

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

  • Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.
  • A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to here. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to here to download a copy to install on your own server. It is also free.
  • A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
    • Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
    • Also you need a MYSQL Database on your hosting package.
    • Your Hosting also needs to be on a LINUX server (Not a windows server.)
    • If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

Evaluating Your Site

It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or 508 Guidelines.

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [1] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.


Evaluating Resources

One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the Trust It or Trash It? tool.

Your members may have many places they find information other than your organization. Encourage them to use the Trust It or Trash It? tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit Genetic Alliance's YouTube Channel.

Factors to Consider

  • The complexity of the site design
  • Resources available to the organization for site design
  • The cost of professional site help
  • The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
  • Location! Prices for web design services tend to vary; they are generally higher near large cities.
  • Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
  • It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
  • On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.
  • Make sure your website is accessible to those with visual impairments. You can use http://wave.webaim.org/ to help with an assessment.


It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: FIRST Harlequin Ichthyosis.”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: HaeImages. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe. However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

Search Engine Optimization and Helping People Find Your Site

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

Generate A Keyword List

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

HTML tags for SEO

Important html tags for search engine optimization are fairly simple.

  • The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
  • Next are heading tags:
    <h1>, <h2>, <h3>
    With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
  • Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like:
    <meta name="description" content="My page description." />
    Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

Incoming Links

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link". Some simple suggestions: - If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking. - If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

Other Traffic

  • Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
  • Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
  • Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. Disease Databases

Internal Links