Register Today!
By registering you and your child with Finding Hope for FRRS1L, it provides valuable information that will help us better understand and track the global map of the FRRS1L community; it will inform researchers conducting a natural history study of FRRS1L; and it also allows us to keep you informed through email updates and news on the progress towards developing gene replacement therapy. Registering is completely optional. Please see the registration information below.
FRRS1L Patient - Two Variants
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This registration form is for patients that have two recessive variants of FRRS1L gene. Please provide both variants in the registration information.
Example: These patients have severe health issues due to double recessive FRRS1L variants that cause epilepy and regression.
FRRS1L Carrier - One Variant
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This registration is for FRRs1L carriers that have one recessive variant of FRRS1L gene. Please provide that one variant in the registration information.
Example: These individuals could be parents or siblings of a two variant FRRS1L patient who are carriers of one recessive FRRS1L variant. May or may not have some healh issues (no direct research results on this).