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- Members 146
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Christy Secor Discussion started by Christy Secor 4 years ago

I have a family in our church that needs an advocate for a family member who has lissencephaly. Their request to use the benefits granted for their family member was denied at a state fair hearing. Any feedback or resources you can share would be greatly appreciated. Thank you!

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Sue Steiner I can sympathize with you, but unfortunately I don't have any suggestions. 4 years ago

Linda L Graffius I hope they have found help by now. but i thought I would check into this. I googled organization to help children with brain disorders. Several... Show more

Home - NORD (National Organization for Rare Disorders)

NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases.

4 years ago