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Findacure -websites for rare disease

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Tania Tirraoro

on 12 December 2016

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Transcript of Findacure -websites for rare disease

The Who, What, When, Where, Why & How of websites
for Patient Groups

A website is a "storefront" and for small patient group/charities this is as vital as it is for big charities
Helps fellow patients find and join you and give a face to your condition.
Enables you to provide correct information about your condition
A place to store your information in pdf downloadable format
Gives legitimacy and seriousness to your group/charity
When applying for funding, it's much more impressive to have a ‘living’ site with reliable content.
Constructing it also concentrates minds about your mission and aims
Necessary for awareness weeks and general fundraising
Build up
What kind of website?
FREE DIY hosted: eg, Wordpress.com, Wix, Weebly, Websitebuilder - (Freemium & not just for blogs) £
DIY Simple site: a few pages, plus a news/blog with space to grow. A small amount of technical skills and time. Templates to customise
Cost: £££££££ -
A central place for your activities.
Gives you a place to have a blog, events page, etc
Include your social media accounts.
A website is better than just a Facebook group so you can keep your information organised and easy to find
You can offer membership services easier
Grow your database
ProBono: Media Trust matching, Creatives without Borders.
By negotiation THOUGH still not completely free - still need some kind of hosting & domain name.
Where Do I find all this?
cheap: local college for web design student
web design company as a charity project
Web Design co.
Someone you know
Google search!
Okay... So what are the options?
Go it alone / DIY
Get free help
Get paid help
It depends on....

PAID & DIY Self-hosted: The above with paid options, Wordpress.org, SquareSpace, Web-builder, Other Content Management System. ££
Bespoke: A paid web designer ££££
Bespoke: A volunteer web designer - Media Trust, Creatives without Borders, Pro Bono ££
COST: Minimal (Domain name). Hosted,
eg, Wordpress - open source, Blogger - owned by Google. Wix - only basic is free
Can make nice, individual flexible website. Can be hosted or self-hosted, SSL. Templates to customise

DIY with Monthly Cost:
Hosted by the providing company so hard to break and security good!
As before, Wix Pro, SquareSpace, Webbuilder, Weebly. Customisable, no coding knowledge needed. Not as flexible as Wordpress but easier to do yourself.

Cost: SquareSpace $144-$216/year Wix: £6-£200/year
A hosting package should give you email, unless you use Google Apps. You will need a package with SQL databases, sometimes the basic ones do not have this.
££ hosting fees ££60-£600
Self-hosted: Wordpress.org, Umbraco, Drupal, other CMS systems.
Very versatile, very customisable and scalable. Needs more and ongoing technical expertise. Able to have membership logins, can be as complex as needed. Could also have an online store
Bespoke paid for:
You must communicate your needs and stay in
touch with the design process & cost
BEWARE, a designer may tie you to their own hosting so if your relationship sours, or they go out of business, you have to start again, so make sure you own the hosting
Anything you want- if you can afford it
Bespoke PRO BONO:
Ensure you know the parameters of the work. You may be left with a complicated site you don't know how to update, or half a site they haven't had time to finish. You may feel you have to accept what's offered rather than what you want!
Cost: £
First things first:
your domain variants
If you don't.. someone else will
But remember - you will have to renew every year (£8+ per year
Choose and buy a domain name
.org? .org.uk?
.com? .net? .co.uk?
Wordpress.org for info,
but install via a web hosting comany e.g,
heartinternet.co.uk, 123-reg,
bluehost.com, godaddy.com, many more. Do your research!
Structuring your site

Include a privacy, t&c & cookies policy as pages linked from the footer
You need to find a hosting company eg, GoDaddy, JustHost, 123-Reg
You can usually install software with one click then need to customise and build.
Security is down to you to ensure you have the right plugins etc, and maybe SSL certificate. Updates for features & security up to you to install.
Websites are
hierarchy based.
Main menu will be your most important pages: Home, About, Patient Info, Condition/Medical Info, Support, News/Blog, Events?, Contact.
About > Mission > History > Who we are, etc
Patient Info > Treatment > Tips > Patient stories etc
Medical Info > Symptoms >, clinical info > Trials, etc
Events > Awareness Days > Fundraising
Don't forget the Donate button - use Paypal, free for non-profits.
Don't forget

To add social sharing buttons
To back the site up reguarly, at the host or off-site
To keep all the passwords strong, secure and backed up
To ensure the admin login is owned by the organisation - not someone's personal one that is lost if they leave
Keep security up to date
To keep renewal payment current
design tips
Look at other similar organisations for inspitation, note what you do and don't like - perhaps even ask them what platform it's on and who did it.
Think about UX- User Experience. Book: Don't Make Me Think Steve Krug
Accessibility features - contrast, text size, whatever your condition needs in particular
Stick to one title/heading and one content font
Don't forget images!
Full transcript