Patients and Families

Choroideremia (CHM) is a rare inherited disorder whose symptoms mirror a more commonly diagnosed condition called retinitis pigmentosa (RP). Symptoms include:

  • Night-blindness
  • Peripheral vision loss, leading to tunnel vision
  • Sensitivity to glare, and
  • Loss of depth and color perception

Up to 70% of individuals with choroideremia are initially diagnosed with RP. Although the symptoms are similar, the root cause for vision loss is different and the only way to know with 100% certainty which condition you have is through free genetic testing.

Although there are currently no cures for either RP or CHM, once the cause of vision loss is known, promising clinical trial options may be available for patients with either condition which could potentially slow progression or preserve remaining eyesight.

The Choroideremia Research Foundation (CRF) is an international nonprofit organization that supports CHM patients, family members and the medical and scientific communities. For patients and families, we provide:

  • Online networking groups
  • Virtual education programs
  • One-on-one support
  • In-person meetings and conferences
  • Updates on clinical trials and research
  • Research grants for scientists
  • Patient advocacy
  • Additional vision loss resources
  • Information on how to access free genetic testing

This initiative is sponsored in part thanks to generous support from Biogen.

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Please note that any information regarding clinical trials is being provided for informational purposes only. The Choroideremia Research Foundation does not endorse any specific clinical trial. Please discuss any questions you may have about clinical trials with your healthcare provider.

Sign up for the Choroideremia Research Foundation’s e-mail list today to learn more!