Getting started with WaihonaPedia

What is WaihonaPedia? (Short version)

WaihonaPedia is a participation platform for groups like ours (for rare conditions) that supports these groups with;

1. Bringing best available knowledge to people around the rare condition
   1. With focus on accessibility (people of 6 years should be able to understand it)
   2. With secondary focus on the knowledge precisely fitting the individual family needs
2. Connect people around the rare condition, creating a community.
   1. The community will mainly be families around the rare disease
      • but also experts from hospitals (centre's of expertise, individual experts with knowlegde about the disease)
      • teachers that want to educate your children/people
      • caretakers that want to provide high quality care and therefor need more information and a network of others
      • researchers that will research the 'unmet NEEDS'
   2. Being independant from data-collecting companies like facebook and/or Google
   3. Accepting only participants that can be trusted (by balloting committee's)

Our goal is to enable you with above,

• The website has a public side (accessible by everybody on the internet but READ-ONLY)
• The website has a participation side to allow participation! (requires that you identify yourself)

Why a public side?

Information

Your community will have information that you already shared; Research-papers, Guidelines, Stories shared by your community (newsletters AND on social media), answers given by your help-line, the experts involved).

You want this information to be as valuable and accessible as possible for your Community, to have a central library for this information

Everybody knows something, together we know everything

Your community-members (especially the new people) will want to know Who Knows what?

Tell them more about your community, your international peers, your partners

News

A community gets a central point where they can BLOG. News relavnt for your community. And easy to distribute in your communication channels; Mail, Social Media

Events

What is organized, how can people Participate. Publish invitations and read the results

Personal benefits for each community member

No one with a rare condition is the same or only that condition!
So you are interested in exactly that information that will help you to take the right decisions.
Each community will try to link you to others that know! WhaihonaPedia will help that process and adding to it that you will be supported with exactly that filter on the libary that fit's your need.

To be able to that We help the community so you can build your Personal profile. This profile will be ONLY for you! It is not shared with ANYBODY!

1. By answering our questionairres you start building the first layer of your profile.
2. By allowing you to share your stories others can recognize them and by this reach out to you and by this build your personal 'friends' network
3. By participating in the ONLINE EVENTS (called ThemeRooms in WaihonaPedia) you will be taking 'training sessions' on subjects
4. By asking questions you will get a very personal annswer of the experts in your community, preferably from multiple angles

Community benefits

It always takes people that share to grow a knowledge base
The shared stories and Questions asked will identify 'NEEDS' of your community
If your community members want they can share the output of their questionairres allowing you to get a better insight in your community members so you can organize the right events, stimulate the needed research etcetera!

How does it work

After logging in, you will see that the navigation bar that welcomes you.

Navigation Bar

• Notice that the login link has been changed to a logout link
  • Dashboard button added
• Added a (place for your) Profile picture
• A learn about... link to the menu (Meet us, News and events) was (will be) added

Dashboard

Through your registration we have set up a personal environment for you. There you will find, for example, an overview of your shared experiences, questions asked, a self-study pack of questionnaires suitable for your condition and invitations to themed rooms. This personal environment has the dashboard as navigation tool and you get there with the dashboard icon.

Profile

Through your registration and the information you provide, a profile is created for you. Think of it as a tool to introduce yourself. This strengthens mutual trust, so tell more about yourself...

Public Side

About CdLS...

Under 'About CdLS' you will find information about your condition.
CdLSWorld (is a WaihonaPedia for CdLS) is not a finished knowledge base. By sharing knowledge and experiences with each other, we develop more knowledge. 

The places where we build that knowledge are called themerooms. In a themeroom (digital workshop), a group of patients, familymembers, carers and experts can go deeper into a subject. This information is then made accessible to all members of the organisation concerned and can also be adapted and elaborated on by members.

Ask the expert...

Under 'Ask the expert' you will find our database of questions asked about CdLS in the last 20 years.
CdLSWorld (is a WaihonaPedia for CdLS) is not a finished knowledge base. By sharing your questions and the answers you would get from our experts with each other, we develop the database (only after your personal approval). On the Dashboard you find the option to ask your personal question

Stories and news (depending on your supportgroup)

You will see news from the world and your community

Meet us

See which CdLS communities, the portners

Events

These are the announcements of e.g. the new theme rooms. But you can also post your symposium, family day or other events and thereby invite people to register!