Hosting a world conference

The goal

The (Your) goal of hosting a World Conference is to;

1. inform your visitors about CdLS (and services available),
   1. by having the best available speakers (both Professional as By Experience¹)
   2. (optional) by allowing your visitors 1:1 consultations with Subject-matter experts
   3. inform (and educate) your local professionals
2. allow your visitors to meet each-other, share experiences and become friends

Quality

We know there are not a lot of experts. The difference between your national gatherings and a world-conference is what quality of experts will be available to your visitors.

Program

The basics

Experience learns that there is need for;

• Presentations (one speaker to a audience of many)
• Workshops (Maximum groupsize 20 people including A workshop lead)
• 1:1 Consultations (questions an answers)

Variations

• Presentations can be supported by a panel that comment or answer questions
• Families require presentations they can understand
• Professionals require in-depth presentations (Doctor to Doctors, Teacher to Teachers, etcetera)
• You can stream a presentation to people on the internet and when you allow these people to ask questions it is a webinar
• You can record presentations to offer people; that could not come, to look at th presentations
• Parallel sessions (Workshops or Presentations), we know CdLS is a complex disease, by this people can choose what they want to see

For families (side program)

When a family brings the person with CdLS, brothers and sisters (siblings), grandparents you can offer side programs

• Sibling program young people (4-10 years)
• Sibling program teenagers (10-20 years)
• Care program for people affected by CdLS

When you offer a care-program the other members of the family can enjoy the conference in a more focused way.

Communication

You need to communicate about your conference. There are a few recommended ways to do so;

• Regular news updates about what you are organizing, milestones reached: You can use a Blog (see Federation Support), Mail, Social Media channels.
• A website (see Federation Support) that articulates all on this page
• Information to the members of the Federation (and beyond), partners that could support you, potential sponsors

Volunteers, Speakers, Fascilitators

As you can see you need people to make a conference work.
Volunteers can help with many things, like a reception desk, guiding people, organize things

Language

• International speakers will not always speak the local language. But they should at least speak English! (think about how you solve a non-english speaker)

Costs

The fascility

Depending on the number of visitors and the duration (number of Days).
Experience learns that we need at least 3 days and this means you need to offer your guests a place to stay.
The fascility you need for presentations, workshops and 1:1 requires attention for accesibilty and safety.

Experience learns that a safe (but expensive) solution is a conference centre that both offers Hotel and Meeting fascilities
This will be (for a multi-day event) the biggest costs. You can influence these costs by thinking of what you want Included and what vistitors can pay for themselves. Think of including the meals in the package or not.

Speakers

Speakers can ask for;

• reimbursing Travel and Expenses they make
• a speakers fee
  _{Read below in how the federation can help you keeping these costs within limits}

Simultanuous translation

To make that your visitors will understand English speaking presentors
Your visitors can ask questions and the expert will understand it
_{Experience learns that this is a downside for parallel sessions; you need more of these services
Also consider this for 1:1 consultations, but here sometoimes volunteers can help}

Volunteers

Volunteers will typically not need payment, but you should provide them with a convenient place to stay (nearby) and eating and drinking

Fascilitators

Fascilitators usually are expensive, but they know how to organize a conference. This can start with negotiating for a fascility, booking and administration of guests, administration of speakers, bringing people from airports to destination, etcetera

What support can you expert of the World Federation

1. The federation will help in getting Speakers for Free. Membership of the Federation requires the members to send ONE professional expert. If you can use this expert as presentor or in another role it will reduce your costs.
2. Levy redemption; The host country does not need to pay the yearly membership
3. Blog-news; Use this Federation Website. You can even ask for a dedicated blog (=news channel) for you event or a Blog in your own language. Did you know these blogs are perfect compagnions for your social media; Create a blog with an image, copy and paste the link into your social media and see the magic...
4. Website; The federation Website offers a event section. Within a few minutes you can annouce the Save-the-Date message. And you can inform your visitors about Location/Conference centre and The program. Did you know it is linked to the resumé's of many of our world experts so your vistors will become exited about the quality of the speakers. You can link it to your registration administration. You can save > 5000,- by using this free service and after the event it will function as a place where you can upload your photo's and/or recordings. The 2019 World Conference has used and co-developped this secion. See the Example...

Special

If your program attracts families from foreign countries and grouped by a language they number 20 or more the federation will pay for simultatious translation

What support can you expect of Members of the World Federation?

See above: They will send at least ONE professional for free. 

Note that if a member is financially weakened that they can not fulfill the obligation, they only have to negotiate this with federation. You can claim no RIGHTS

What will the Federation expect/require

In order to 'Grow' the quality of expertise about CdLS (one of our common goals!) it is thought usefull to organize Council and SAC meetings.
In these days these meetings can be increasingly convenient ONLINE. But BI-Annually we think it brings extra quality to these two meetings to meet each other.

This will fit the schedule of the BI-Annual world conference so typically we ask the host to organize two sessions of 1 day (they can be parallel)

1. A Federation Council meeting that will bring together all the represntatives of the Federation members plus candidate members
2. A SAC meeting that will bring together all the Medical Directors of the SAC to exchange knowlegde and how they can best serve the families

For the Federation meeting we have since Portugal (2015) simultanous translation English-Spanish

The costs for these two meetings can be invoiced to the Federation, but it needs a solid description of services and transparancy of ALL your expenses of the connference to the treasurer of the federation to safeguard these costs are FAIR.

1. ^ There can be lot of value in having a familymember sharing his/her experience