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Group Description

A mitochondrial disease support group for all ages. Caregivers and patients welcome. Also welcome is anyone currently seeking a diagnosis, or other mito related disorders.

All members can add files, to the database and links, and I hope you do!

I am hopeful that we can create a wealth of information stored in the groups files and database. I would also love to see everyone's favorite links(including blogs!)available to group members as well.

Database- I am experimenting with creating a Dr. Opinion database. Over the years and from living in different communities we have seen many Drs. Often, I have had to spend a lot of time finding Drs. that were capable of handling our unique medical needs. Another issue is that while one Dr. works very well for one Mito family, they do not always work well for another. I would love to see multiple opinions on the same specialists. As a community, Mito families have hugely variable medical needs. A Dr. that doesn't fit well for my family, might be perfect for yours! If you chose to add a comment about a Dr. to the file, I ask that you try to be fair and stick to the facts. Believe me, there are a number of Drs. I have some strong negative feelings about, but at the same time I am aware that other families have had nothing but positive experiences with the same Dr.

The basic group rules apply here- please respect folks privacy. Please be respectful about how patients chose to manage their disease.

Any input would be great! I think a group should be run by the group and it's needs versus mine :-)

Group Information

Group Settings

  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

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