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It is important to take time to process your child's diagnosis and document baseline medical information. ​

Potential initial steps:

• Rare Disease Support Orgs: Connect with national and local organizations familiar with your child's condition and will be able to speak to resources, treatments, and potentially connect you with other families. Search NORAD's comprehensive database.

• Documenting health information: A crucial step early after your child's diagnosis is to document core health information. This will ensure you have clear baseline information which you can share with medical professions as you build your care team. Sample template.  

• ​Telling your family and loved ones.....

• Learning who can support you when and where

• Seek mental health supports

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Resources & Action Steps:

• Philosophy of Care: ​

• Clinical Trials: Gene therapies and other treats to support rare disease children is constantly evolving. Ask your genetics and disease support organization to share the latest on treats and trials. 

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Potential Actions:

• ​Insurance Case Manager: Contact your insurance company and ask for a dedicated case manager. This individual should help you receive the best coverage possible. 

• State Review

• ​Durable Medical Equipment: Consider searching our database of support organizations that may help aquire equipment.  

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This is a Paragraph. Click on "Edit Text" or double click on the text box to start editing the content and make sure to add any relevant details or information that you want to share with your visitors.