Support groups are a great way to meet others that have your genetic disease. Many support groups have local or regional chapters that may make it easier to actually meet up. There are also many online support groups, listservs, and Facebook pages as well. Two good starting places to find reputable support groups are [link url="www.geneticalliance.org” target=”_blank”>Genetic Alliance and [link url="www.rarediseases.org” target=”_blank”>National Organization for Rare Disorders.
Other Questions About Where do I find others with my genetic disease?
- Will my insurance cover treatment for X-linked agammaglobulinemia?
- Will my hearing loss from otosclerosis keep getting worse and worse as I age?
- Will my child outgrow 2,4-dienyl-CoA reductase deficiency?
- Will my child have glycogen storage disease IXa for the rest of their life?
- Will my ankylosing spondylitis symptoms get worse during my pregnancy?
