Submitted by Suvi Nieminen-Smith on Sunday 30th January 2022
Published on Thursday 3rd February 2022
Current status: Closed
Closed: Wednesday 3rd August 2022
Signatures: 146
Fund support and research for children suffering with UBE2A Deficiency Syndrome
Provide more financial support for children and parents of children living with this condition. Also research into this rare genetic condition, which affects my son and our family.
This is a rare and very misunderstood condition and there is a lack of support for children living with this disabling condition and their parents. This is leading to poor mental and physical health of parent caregivers as professionals don’t understand the condition properly or how it impacts individuals. It is not the same as any other condition and has it’s own unique problems which are significant to families living with this.
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18.190.253.22 Thu, 14 Nov 2024 23:11:03 +0000
