Contact 1 — FInding Hope for FRRS1L

Register your FRRS1L child
with us!

By registering 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 your child is completely optional.

Note: Registering your child is different from joining our FRRS1L family member community. To join as a Finding Hope for FRRS1L member please check out the FRRS1L Family Member page.

FRRS1L Child 1

Name

First Name

Last Name

Year of Birth

Gene Variant #1: Inherited from Father

Insert gene variant name. Example: p.GLY246del

Gene Variant #2: Inherited from Mother

Insert gene variant name.

Location: City, State, Country

Nationalities/Origins

FRRS1L Child 2 (Optional)

Name

First Name

Last Name

Year of Birth

Gene Variant #1: Inherited from Father

Insert gene variant name.

Gene Variant #2: Inherited from Mother

Insert gene Variant name.

Location: City, State, Country

Nationalities/Origins

Additional Children (Optional)

If additional children with FRRS1L please provide names, ages, Gene Variants, location, and nationalities/origins.

Parent or Gaurdian 1

Name

First Name

Last Name

Parent or Gaurdian 2 (Optional)

Name

First Name

Last Name

Additional Information

Preferred Language:

Can you speak English

May we contact you via email with Finding Hope for FRRS1L organizational news and updates

May we provide your email(s) to current researchers conducting a natural history study on FRRS1L as part of the gene therapy research process?

Register your FRRS1L child with us!

Finding Hope for FRSS1L

Register your FRRS1L child
with us!