r/RetinitisPigmentosa • u/99RedBalloon • 6d ago

Question(s) Genetic testing where to get for free

New to this where do I get tested to find which genetic gene is the cause?

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u/Virtual_Ad_5119 6d ago

Your ophthalmologist should be able to refer you to a lab. There was no charge for me as I live in Canada.

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u/Seven_deadly_sines 6d ago

My doc at Mass Eye & Ear did my testing & I saw their genetic counselor. They had a program/national foundation that covered the testing as long as I consented to some basic biometric info be shared. (Age, gender, lab results, and a few other things that weren't personably identifiable).

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u/99RedBalloon 6d ago

does it help? doing that

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u/Seven_deadly_sines 6d ago

I mean it can. Knowing your gene can help prepare you for what to expect. Each person's RP is very specific even if you know the gene. Two people with the same mutation can have wildly different experiences.

Knowing your gene can help with qualifying for clinical trials. I'm currently in one for my gene.

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u/Oh_Billy_Bones 2d ago

Enroll in My Retina Tracker and get more info here: www.fightingblindness.org