Families

There are two Lowe patient websites we would encourage families to use:

  • There is a Lowe Syndrome family forum on Facebook administered by the LSA USA Lowe Family Facebook Page
  • Click here for the Lowe Syndrome patient register form by CoRDS (Coordination of Rare Diseases at Sanford), which is a centralised international patient registry for all rare diseases.

The first form is to register a Lowe person with CoRDS as a user, as a Parent or legally authorised representative (LAR).

Please note as a UK resident you need to enter/select :

  • Field 18- “Not In USA(NoUSA)”
  • Field 58 – First disease information – Please ensure you enter/select “Oculocerebrorenal syndrome of Lowe (OCRL”

This will then start the Lowe Syndrome Association questionnaire. This is a 26 page form and we are seeking permission to publish the form here as a pdf so that you can prepare the answers then go online to complete the survey. We would encourage you to also file your genetic test results letter, and any other doctors letters detaling medications and treatments.

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