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Join the International ARVD Family Support Network
"If this group was a town, it's the place I'd like to live." CP ¹
"I was saying to my wife last night at dinner that I think this support group may be the number one thing that's turned me around both mentally and physically with regard to me having ARVD, and I'm feeling SO much better since joining. ... I know this group has helped me immensely. No doubt." DW ²
What is the "International ARVD Family Support Network"?
Established in April of 1999, this is a private and confidential self-help support community. Membership is composed of people who have either been diagnosed with ARVD/C, or had one of their family members diagnosed with it. The purpose of the group is to support one another and to share information about ARVD/C. The group is directed and moderated by a volunteer staff.
Since inception, the ARVD Family Support Network has supported one another through more than 54,000 communications. Members treat each other with respect and concern. The group offers a comfortable "family and friends" atmosphere.
How does this group meet?
This group meets via the Internet through a private "Yahoo Groups" website and/or list serve (email communications.) Due to the International nature of this group, communications occur around the clock as members ask questions, share information or reach out to support other members.
The language used for communication is English. If a group member has difficulty with English, bi-lingual group members may reach out to assist when they have time available.
What requirements must I meet in order to join this group?
You or one of your family members must have received a diagnosis of ARVD/C. Potential group members are briefly interviewed prior to group admission. Members must agree to respect the private/confidential nature of the group. Because this is a private group, membership is subject to the discretion of group leadership.
What will be expected of me as a member?
In general, the greatest expectation of each member is that they honor the privacy and confidentiality of other group members. Understanding that this is a self-help group, members are encouraged to participate in give and take communications. Even so, we do realize that some members may be shy.
What can I expect as a member?
Everyone's expectations are different. Upon joining the group, many members express that they immediately lose their sense of feeling alone with their diagnosis. Many members feel like the group is one of the best sources of information on the web. All members know that they have found a place where they can query other patients about their personal experiences with ARVD/C.
From which countries do members of this group come?
Over the course of years members have arrived from: Canada, U.S., Mexico, Uruguay, Brazil, Ireland, Scotland, Wales, England, Finland, Sweden, Netherlands, Belgium, France, Germany, Spain, Italy, Russia, Dubai, Kuwait, South Africa, Malta, New Zealand, Australia, China, India, and Turkey (some countries may have been missed in the listing).
What are the ages of group members?
Almost all age groups are represented in the midst of the membership. Parents represent their small children (younger than teen to early teen.) Older teens to those in their 70s participate. We await welcoming our first 80 year old or older member. Whatever the age of a group member, they are fully welcomed into group communication.
Do all group members communicate at all times?
No, actually they don't. Our experience is that new members generally have many questions. Typically when a new member joins there is a flurry of questions and answers. Members who are currently reading and who have the time to respond will hop in to lend a hand. After the flurry, generally the group quiets down with the floor open to discussion. Discussions range from the educational (sharing arriving ARVD/C news and information), to sensitive and encouraging (as needed), to exceptionally lively -- as group members build and strengthen relationships with one another. Group relationship is generally long term, with many members quite active and many quietly reading in the background until they have a question or something to share.
Is there a cost to join this group?
No. If you have Internet access, you have all you need to join the group.
How do I join this group?
In order to join the support group, you will need to take a moment to "Sign Up" at Yahoo Groups first. Once you are signed up at Yahoo Groups, you can apply to join the "mmettera" group. To begin this process, click this link and then the "Join this Group" button. If you have not signed up with Yahoo Groups, you will be given an opportunity to do so.
¹ In October of 2002, CP became a member of the above online support group. On March 29th, 2007, this gentleman was welcoming a new member to the group. In the midst of his welcoming message, he wrote, "If this group was a town, it's the place I'd like to live." Can there be any higher praise of a supportive community?
² In July 2009, DW joined the above online support group. In August of 2009, a little over one month after joining, he shared the above quote with his support group team members.