2 days ago

New Australian research paper looking into the spillover effects on parents of paediatric rare conditions including, epilepsy encephalopathy.

Paediatric rare genetic conditions appear to be associated with substantial parental health spillovers. This highlights the importance of including health effects on family members and caregivers into economic evaluation of genomic technologies and personalised medicine. Overlooking spillover effects may undervalue the benefits of diagnosis and management in this context. This study also expands the knowledge of family spillover to the rare disease spectrum.

Full article via link. ...

Parental health spillover effects of paediatric rare genetic conditions

link.springer.com

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Genetic Epilepsy Team Australia - GETA

5 days ago

A family in the US found themselves in hospital on a COVID ward with her medically fragile child. She writes about her experience and highlights some things we can do to prepare.

"Our experience serves as an example of how children without COVID-19 might still find their way into the hospital during this scary time despite best efforts to avoid it. Children like Marie are fragile – which means that not only are they at high risk for COVID-19, but they are also at high risk for myriad other complications, none of which cease during this crisis".

Yssa Dean DeWoody ...

24 Hours in the COVID-19 Ward with Marie

ring14usa.com

Our experience serves as an example of how children without COVID-19 might still find their way into the hospital during this scary time despite best efforts to avoid it. Children like Marie are f...

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