Trisomy 1q

Organizations

Are there good support groups for trisomy 1q?

Trisomy 1q (aka 1q duplication) is quite rare. The Rare Chromosome Disorder Support Group has a group of families from all over the world who have a child/children with trisomy 1q. There is a publication by this group that has information from many of the families. The last page of the publication has information on how to contact the Rare Chromosome Disorder Support Group and can be accessed here. There will likely not be any support groups in your area specific to other families who have trisomy 1q. Be sure to check with your healthcare team to see if they have any other families with chromosome abnormalities that would open to connecting.

If you are a parent that has lost a child with trisomy 1q, there are many online support groups that may fit this need. "Share" is an organization that has resources for parents after the loss of a child in addition to providing help organizing support groups. They can be found at http://nationalshare.org/. Compassionate Friends is another organization that offers similar resources: http://www.compassionatefriends.org/Find_Support.aspx.

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Where do I find other people with trisomy 1q.

Where do I find other people with trisomy 1q.

Trisomy 1q (aka 1q duplication) is quite rare. The Rare Chromosome Disorder Support Group has a group of families from all over the world who have a child/children with trisomy 1q. There is a publication by this group that has information from many of the families. The last page of the publication has information on how to contact the Rare Chromosome Disorder Support Group and can be accessed here. There will likely not be any support groups in your area specific to other families who have trisomy 1q. Be sure to check with your healthcare team to see if they have any other families with chromosome abnormalities that would open to connecting.

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