Bardet-Biedl Syndrome

Organizations

Are there good support groups for Bardet-Biedl Syndrome?

The Bardet-Biedl Syndrome Family Association has information on what Bardet-Biedl syndrome is, ongoing research, and upcoming conferences. In addition, they provide a newsletter to connect families and keep them up-to-date on research and options for treatment of and therapy for Bardet-Biedl syndrome. They also have a Facebook page: https://www.facebook.com/BardetBiedlSyndromeFamilyAssociation/.

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Where do I find other people with Bardet-Biedl Syndrome?

How do I start a support group for Bardet-Biedl Syndrome?

Where do I find other people with Bardet-Biedl Syndrome?

The Bardet-Biedl Syndrome Family Association connects families and people with Bardet-Biedl syndrome. After asking people about their specific genetic mutation, a user can be connected with someone who has Bardet-Biedl syndrome or family members of those affected.

They can be contacted at their website http://www.bardetbiedl.org/ or through their Facebook page: https://www.facebook.com/BardetBiedlSyndromeFamilyAssociation/.

A young lady named Kaylin has been very open about her diagnosis and about living with her vision loss. There was an article written about her (https://globalgenes.org/raredaily/bardet-biedl-syndrome-robs-13-year-old-kaylin-of-her-vision-but-not-her-spirit/) with a link to her Facebook page if you wish to contact her.

A patient may also ask one’s doctor whether she knows of any person or families willing to meet and talk about the condition.

How do I start a support group for Bardet-Biedl Syndrome?

There is a national support group for Bardet-Biedl syndrome (http://www.bardetbiedl.org/). In the case that one wishes to start a local chapter or support group, one may contact the national group to ask for support and suggestions for starting, or about how they themselves got started and whether they have contacts nearby. Getting in touch with local doctors and service workers may also help to network with affected individuals and families in one’s area; they may also may have suggestions for referrals or other medical information people may want or need.

References
  • http://www.bardetbiedl.org/

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