Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Got a Great Research Idea? ‘All of Us’ Wants to Hear It!
January 18, 2018
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
I have the version of AMPPE that does not go away in a few months. I've had it since 2010. My vision seems to be getting darker, even in a brightly lit room -- the longer I read, the darker it gets. I have deposits on the macula of both eyes. Has anyone ever noted increasing memory problems after the AMPPE starts? I'm wondering if there are deposits in the brain similar to the deposits on the eyes, but with the deposits in the brain causing memory loss. Has anyone tried removing the deposits on the macula, perhaps with a laser? Do the deposits damage the macula? See answer
My husband has been diagnosed with acute posterior multifocal placoid pigment epitheliopathy. Is the vision loss associated with this condition permanent? See answer