Updated April 15, 2011
New On-line Support Groups
Alpha-1 Canada is launching new support groups across Canada and we need you to participate. We are looking for volunteer support group leaders and support group members in all provinces. There will be support groups for Alpha-1 patients, caregivers and for parents of Alpha-1-affected children.
Setting up and operating support groups in Canada for people with rare diseases like Alpha-1 has always been a challenge. In the case of more common diseases like cancer or diabetes for example, the pool of potential Members is large and creating a group in a town or even part of a town that can meet regularly and in person is a very real possibility.
The same cannot be said in the case of Alpha-1. Any given Alpha may be the only Alpha in town or the only Alpha for miles. This used to mean that support groups for people with rare diseases were not possible or required hours of driving.
We have found the solution to this quandary. Thanks to a generous grant from the Ontario Trillium Foundation Alpha-1 Canada has developed an on-line model for support groups using Internet tools to bridge those miles and make support group attendance possible and easy for the majority of people with Alpha-1, their caregivers and parents.
On-line virtual meeting applications use common browser plug-ins and connect through a hosting service. Most applications are platform-independent, meaning users on PCs and Macs can share identical functionality. At appointed times, participants log on to a website to join Group meetings. The application window includes a pane that lists current participants, a chat pane for written interaction, an audio/video pane, and a content window. The audio/video pane shows live video of all the other Group Members.
Group Members can be seen and heard in real time by other participants, who can communicate with one another and the Leader through the chat pane and the audio and video.
Interested?
Here's what you'll need
Frequently Asked Questions
Confidentiality Agreement