We know how important it is to have support from families who are also affected by Smith-Magenis syndrome. You can contact us and we will help your family get in contact with other families. Whether it be a family whose child has some of the medical conditions your child has (i.e. heart defects, kidney abnormalities), families in your area or families with children the same age as yours we are happy to help you make those connections.
There are picnics, events or fundraisers planned annually in different parts of the world. You can check here for get togethers in your area. We will post them on the calendar of events when there are dates set. If you would like to us to post an event on our calendar email [email protected]
You can join the online support group at www.smithmagenissyndrome.ning.com
You can also visit the SMS diagnosis map. Salli and Nick Hunt, parents to Sam have created an international SMS diagnosis map. Click here to view the map. If you would like to be included on the map you can contact Salli at [email protected]
To read about other family's journeys with Smith-Magenis syndrome visit our family websties page.