Isovaleric acidemia

Organizations

Are there good support groups for Isovaleric Acidemia?

There are several support groups for people with Isovaleric Acidemia online. Since Isovaleric Acidemia is in a group of disorders called organic acidemias, the Organic Acidemia Association, a ThinkGenetic Advocacy Partner, is a good support group for Isovaleric Acidemia. There is also an online Facebook support group for people and families affected by Isovaleric Acidemia which can be found at https://www.facebook.com/groups/120097834667627/. Sometimes there are local support groups in certain parts of the country. You can ask your healthcare professional if they know of any local support groups, meetings, or events for families with IVA.

References
  • http://www.oaanews.org/index.htm
  • https://www.facebook.com/groups/120097834667627/
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Where do I find other people with Isovaleric Acidemia?

How do I start a support group for Isovaleric Acidemia?

Where do I find other people with Isovaleric Acidemia?

You can find other people with Isovaleric Acidemia online through different support groups like the Organic Acidemia Association (a ThinkGenetic Advocacy Partner) or a Facebook group entitled "Isovaleric Acidemia Parent and Family Support" at https://www.facebook.com/groups/120097834667627/. If you are interested in meeting other people with Isovaleric Acidemia in person, this may be difficult since it is a rare genetic condition. However, if you see doctors that are familiar with Isovaleric Acidemia or other organic acidemias, they may know other people with Isovaleric Acidemia in your area that they can put you in contact with. Sometimes there are local support groups, meetings, and/or events depending on what part of the country you live in.

References
  • http://www.oaanews.org/index.htm
  • https://www.facebook.com/groups/120097834667627/
How do I start a support group for Isovaleric Acidemia?

If you are unable to find a support group for Isovaleric Acidemia in your area or online that is helpful to you, you can start your own support group. First, talk to other support group leaders and see if they have helpful information. You also may want to look for resources that your group may need before you start your support group. If you want to start a support group online, you may be interested in using social media platforms such as Yahoo! Groups or Facebook to connect with others. If you want to start a support group in person for Isovaleric Acidemia, this may be challenging since this is a rare genetic condition. However, you can look at the Nonprofit Toolkit for resources.

References
  • http://www.healthcentral.com/chronic-pain/coping-439459-5.html

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