Retinitis pigmentosa

Organizations

Are there good support groups for retinitis pigmentosa?

There are several support groups that help individuals with retinitis pigmentosa and other conditions that cause retinal degeneration and/or blindness. A few such groups are:

  • Retinitis Pigmentosa International: This international charity is devoted to identifying treatments and, ultimately, a cure for this disease.
  • RP Fighting Blindness: This UK-based charity was started by individuals with retinitis pigmentosa to increase awareness of the disease, advocate for affected individuals, improve research efforts, and provide support to individuals and their families.
  • Retinitis Pigmentosa Support: This is a private, online group based out of Facebook. As of October 2016 they had over 8,000 members. This site serves as a place for individuals with retinitis pigmentosa and their families share experiences and discuss issues that affect their lives.
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Where do I find other people with retinitis pigmentosa?

Where do I find other people with retinitis pigmentosa?

Online support groups are a good way to meet and connect with other individuals with retinitis pigmentosa and their family members and loved ones. The following are online support groups that may offer such opportunities:

  • Retinitis Pigmentosa International: This international charity is devoted to identifying treatments and, ultimately, a cure for this disease.
  • RP Fighting Blindness: This UK-based charity was started by individuals with retinitis pigmentosa to increase awareness of the disease, advocate for affected individuals, improve research efforts, and provide support to individuals and their families.
  • Retinitis Pigmentosa Support: This is a private, online group based out of Facebook. As of October 2016 they had over 8,000 members. This site serves as a place for individuals with retinitis pigmentosa and their families share experiences and discuss issues that affect their lives.

Additionally, consider talking with your doctor or a genetic counselor about ways to be put in contact with other people affected with or by retinitis pigmentosa.

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