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New Family - Welcome Package

A summary of the contents of the welcome package. Essential medical information for families and caregivers of individuals with CdLS.


If you reach out and send us your mailing address you will receive a package via Canada Post to your door with essential medical information to empower you to be the best advocate for your loved one with CdLS.


(This is one take - no edits -nothing fancy - and I’m an amateur - be kind).

Broad Overview of Mailed Package ⬆️

The Basic Package - Medical Documents ⬇️

Here you can download the key medical documents outlined above:


  1. Global Consensus Statement on the Diagnosis, Management and Treatment of CdLS- bring this to your loved ones medical team


  1. Non-medical version of the above document


  1. Summary document of the above that is easy refer to and outlines the ages and diagnostics tests that need to be done.


  1. Dr. Peggy Marcon's letter to provide to your loved ones primary care provider (GP, NP, paediatrician) also provide for the Gastroenterologist.


    English:


French:




  1. Growth chart - male (age 0-18)


  1. Growth chart - female (age 0-18)



  1. Psychomotor Developmental in CdLS chart (***outdated including only severe NIPBL cases researched in 1993)



  1. CdLS & the Eye



  1. Oral Health in CdLS




Have you received a welcome package?

  • Yes

  • No


 
 
 

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