Thoughts on starting a National CdLS Support Group
As families around CdLS we are highly motivated to improve the situation in our 'own' country.
There is a general consensus that families around CdLS need;
- other families to share their experiences
- information
- some information is country independent, the remaining question is : 'it accessible to your countries citizens'? (can they understand the terminology used and more important can they understand the language of the information)
- some information must be tailored to the country specific health-system
- awareness about the syndrome, so they feel understood and helped by the health-system, by their neighborhood.
Start small
Almost all of our groups are founded by 1 family that believes the above is important!
And do not be afraid, today the internet offers a lot to just start and find 1 or two other families. With 2 or 3 you are already a 'community'.
Do you have the time ?
In the beginning, when you start small you basically only need time... Plan your ambitions in such a way that you do not need money !
Access to money is typically more realistic when you have achieved some awareness, funds are typically won when they are convinced of the relevance of your group. (although you might be the lucky-one that has a sponsor)
We have learned that organizing some meetings might be your first goal. This requires a physical location that is not too far away for the participants. For this you must find 4 or 5 families in travel distance.
Social media might be your first focus...
A website
The internet is a fast changing environment. Zillions of websites are created and they compete for attention. So it is important to set your goals upfront! Why do you think you need a Website?
